The ALS Post

ALS & I

ALS and I are constant companions, intimate friends, and mortal enemies.

I want to remain a functional member of my family and continue to contribute to my community. ALS would see me fully paralyzed and mute, unable to communicate, much less participate actively in the world around me. ALS wants to render me “a lump of flesh in a chair.”

The thing about ALS that differentiates it from so many other enemies is its record: It is predominately undefeated. While approximately one in 1500 ALS patients will plateau or “reverse”, most of the people whom this disease embraces fall conquered within two to five years.

Since my diagnosis I’ve quite intentionally avoided ceding a great deal of my time, thought, and energy — you know, my life — to writing about or “fighting” ALS. As I wrote early on, I did not want my life to become the “all ALS channel.” By maintaining my focus on my advocacy and my family, I sought, and still seek, to deny ALS ownership of my legacy.

On the other hand, it’s important, I think, to share the experience, and thus I give you my one and only post about my cause of death.

~~~~~~~~~~

Diagnosis and Misdiagnosis

The average ALS patient takes close to one year to be definitively diagnosed.

A whole. Freaking. Year.

It is a “diagnosis of exclusion”: A doctor will conclude that the problem is ALS only after ruling out every other possible cause.

And if you’re super lucky like me, you’ll be misdiagnosed, possibly several times. In my case, it wasn’t that I was told that I had a different disease; my first neurologist, however, told me emphatically that I did not have ALS. Yup. That’s right. I have my medical record in which Dr. Kirk, of Raleigh Neurology, typed into my notes, “I assured Ms. Connell that she definitely does not have ALS.”

Whoops.

He concluded this after an EMG — nerve conduction test. It’s a rather a gruesome test, as the neurologist inserts a needle into each nerve, ankle to hip, wrist to shoulder, pelvis to neck (up the spine), and finally into the neck and under the tongue. The test confirms that the nerves are communicating properly with the muscles… or not.

At the time of my first test, my conduction speed was within the normal range except for one nerve in my left hip. (My left hip had been aching during rigorous walking and running for about three years. I thought it was age or early arthritis.) Dr. Kirk also assured me that if I had ALS I would be experiencing symptoms on my right side as well. At the time only my left leg was weak, and I had foot drop on my left side only. After ruling out spinal impingement and MS, Dr. Kirk said there was nothing else he could do, that my problem was likely an inexplicable neuropathy, and that I should get on with my life.

Yup. Run along.

What angers me, however, is that when I called back two months later to say I felt the symptoms beginning on my right side and asked if I should come back in, Dr. Kirk said no, that he was “absolutely sure” that I did not have ALS, and he saw no reason for me to return.

I still haven’t paid them. They can literally pry the money from my cold, dead estate. (I made several costly decisions in reliance on this misdiagnosis.)

After my primary care provider ran every test imaginable, including a test for Lyme’s disease, she sent me to a Duke orthopedist. He was wonderful. When we asked if it might be my Achilles’, he laughed out loud and said, “You have whole leg weakness: You’ve got to go back to the neurologist.”

This time my provider sent me straight to Duke.

Now, if you think you have ALS and you’d like to the visit the clinic at Duke, you’ll need to have been primarily diagnosed as potentially having ALS, and you’ll need to be prepared to wait four to six months.

Awesome, huh?

As I had no preliminary diagnosis (Thanks again, Raleigh Neurology!) and was not particularly keen on waiting that long, and as my left leg continued to weaken, requiring the use of a lower leg brace to walk, we made an appointment with the “first available” neurologist at Duke. Dr. Chilukuri, a spine and stroke specialist, told me that a) I did not have mitochondrial disease, b) she was not really qualified to discuss motor neuron problems (like ALS), and c) that I might have to accept that I would never be diagnosed and just get on with my life.

Imagine my joy. (I had now been seeing doctors for almost five months.)

But she did ask if I wanted to see Duke’s motor neuron specialist. Ummm………………. YES!!!!! Yes, I indeed do want to know what’s wrong with me! duuuuh.

This appointment with Dr. Chilukuri was in early December. The first available appointment with Dr. Lisa Hobson-Webb, the motor neuron specialist, was February 27th.

And so I waited. Waited almost three more months as my left leg continued to deteriorate and my right foot began to weaken.

On February 27th, I arrived at Duke “with bells on”, eager to learn if I would ever find out what was wrong with me. The truly wonderful Dr. Hobson-Webb spent over an hour just listening. Early into our discussion, I teared up and asked her, “What do you think are the odds that you’ll be able to figure out what is wrong with me? 50/50?” She looked at me confused and said, “Why do you ask that?” When I told her how the other doctors had dismissed me, I saw her jaw tighten and her lips purse. Clearly she had heard this story before and didn’t much care for it.

She then gave an answer for which I will always be grateful: “There is a 90 to 95 percent chance that I will be able to diagnose you.”

Unfortunately I had to endure another EMG/nerve conduction test. She also took ten vials of blood to test for anything that might mimic ALS.

Two weeks later, on March 12, 2014, when all the tests were back, she delivered the news that I did, indeed, have ALS. I was unsurprised — almost relieved. The first words out of my mouth?

“I knew it.”

When my husband asked her how long she had been diagnosing ALS, she told him several years. And when he asked her how many times she had been wrong, she told him none.

None.

At that point, I was still fairly physically able — my leg brace was my only assistive device, and I could drive, walk, talk, eat and function independently — my primary reaction was not sadness, but vindication: I wasn’t some crazy lady or hypochondriac who had convinced herself that she had a degenerative and terminal disease. (Eff you, Dr. Kirk!)

Becoming a lump in a chair then seemed a quite distant prospect.

All that followed – my stories of reacting to and living with ALS – are documented from the beginning of this blog. I tell you this story about ALS itself because it’s worth noting that since the beloved national sports hero Lou Gehrig gave his retirement speech just over 75 years ago, virtually no progress has been made in diagnosing and treating ALS, also known as Lou Gehrig’s Disease.

Why, you may ask? Well, it’s the same reason that there are so few motor neuron and ALS specialists are available, so that patients must wait months and months to be diagnosed: There’s no money in it.

As an “orphan disease”, ALS never builds up a mass of patients or a huge lobby — ALS patients die too quickly to organize and pressure Congress, researchers, or the pharmaceutical industry to invest in our disease.

Last year the viral sensation known as the ALS Ice Bucket Challenge fanned some flames of hope. Over 122 million dollars flooded the coffers of the ALS association and other research advocacy groups. And yet, still, the wonderful researchers putting this money to use are looking for the biomarkers — the cause — of ALS. Why do a person’s motor neurons (in the brain) stop communicating with the muscles? Why do they begin shutting down in different areas? Why do they shut down at different rates?

I have no hope that these answers will come in my lifetime. I am not morbid or unusually pessimistic, but I have, from the beginning, felt that focusing on a cure in my 2 to 4 years of remaining life was not a realistic or productive goal. However I hope these answers will come, in the same way we all hope that cancer, Parkinson’s, Alzheimer’s, and all debilitating diseases can be eradicated to ease human suffering.

An ALS Primer

First, the disease is confounding in its unpredictability. For the first year, my “progress” (ironically, in the world of ALS, progress means deterioration) was slightly slower than average. In late 2014, assuming my rate of progress would remain constant, I anticipated another full year of  reasonable quality of life. For me this quality of life meant the ability to continue to use my arms and hands and… perhaps most crucially… my voice.

In the words of Toby Zeigler, one of my favorite characters from The West Wing, I “tempted the wrath of the whatever from high atop the thing.” As soon as I made plans in my mind to travel to the Network for Public Education national forum and began to draft a series of essays, my ALS hit the gas. From early 2015 through our move into a new home, my rate of progress steadily increased. One morning in January, I could no longer pull myself up the three steps from my car into my home. Suddenly, I was ramp and van dependent. A few weeks later — and this is the fun stuff — I could no longer stand unaided from the toilet.

Folks, after ALS takes your strength, it takes your privacy and your dignity.

In September, a soft tissue infection, initially misdiagnosed as pneumonia (thanks, UNC ER!) put me in the hospital for a miserable week. There, Infectious Disease docs treated me with a trifecta of broad spectrum, kidney-killing antibiotics and sent me home, where they failed to adequately monitor my Vancomycin levels. A week later, violently ill from a toxic level of Vancomycin, I had to spend another horrific day in the ER, only to be readmitted while nephrologists worked with Infectious Disease to switch my antibiotics and ameliorate the “acute renal injury” that their first pharma cocktail had caused. After returning home and finishing out 2 more weeks on IV antibiotics, I had lost 20 pounds, as well as half of my arm and hand strength and a significant part of my voice.

Poof.

So much for my final plans for travel and the weeks I planned to spend writing on my back porch. All strength for these things had evaporated, and there was no hope that this strength would return.

Fortunately as a person who finished law school at 49 and managed to pass the bar, I must say that I found myself a match for ALS as I simply chose to accept and forge ahead. Sometimes, I laughed; sometimes, in more sentimental moments, I cried – but never in fear or despair.

I had fortunately chosen to stay involved with friends and to travel as much during the spring of 2015 as I possibly could using my conversion van and the companionship of dear friends. I had made final trips to Orlando, to D.C., and to the 319 (home of dear friends in Alexandria, Virginia). I took my family on a trip to Broadway. I hired nursing assistants, and I accustomed myself to living without underwear (“My Life Flying Commando”) and being hoisted with a lift onto the toilet several times per day.

It’s not like a had a choice, but I did choose to accept and, as much as possible, to laugh and forge on. Where many would ask, “Why me?,” I always chose to say, “Why not me, if anyone?”

Many have asked, and so I’ll try answer: What is it like?

First, “It depends.” (If you are a law school friend, this answer will be quite familiar!) Basically, ALS begins in one of three ways:

1) It impedes swallowing and wreaks havoc on the victim’s voice. This is called bulbar onset. Some of the fun indicators of bulbar onset are drooling, choking, and slurring your words like a drunken sailor. Raleigh newscaster, Larry Stogner, fell prey to this version of ALS and resigned because he could no longer clearly pronounce his copy. Often bulbar onset is deemed the “worst” because it progresses most quickly to the diaphragm and respiratory muscles.

Most ALS patients die from respiratory failure.

2) The second common onset is the weakening and trembling of the hands and the upper extremities. Victims of upper extremity onset can walk and talk but grow unable to button their clothes, cut their food, or shake your hand. Imagine velcroing 50-pound weights around your wrists and lower arms, then trying to get through your day. How would you brush your teeth? How would you drive? And, once again, returning to the scatological aspects of life, how would you wipe yourself? This onset is also known as “man in a barrel” syndrome, and once again after sapping the hand and arm muscles of strength until they are paralyzed, upper extremity onset ALS, like bulbar onset, moves on to shut down the diaphragm and lungs. These victims may have the muscle control to climb stairs, but cannot muster the breathing ability.

3) The third way ALS attacks is from the lower extremities. This onset is often considered “the best” because the motor neuron shutdown begins farthest from the diaphragm and bulbar areas. My ALS began in my left foot and leg, progressed to my right foot and leg, and lulled me into a false ( I think!) belief that I might survive closer to four or five years — that I might even beat the odds and survive a decade or more!

ALS is a fickle companion.

During my first year my respiratory numbers decreased only from the high 90s to the low 90s. In the first quarter of 2015 they plummeted to the low 70s, in the second quarter to the low 60s, and now hover in the low 40s. What does this mean? It means that one never knows anything about ALS — which motor neurons the disease will shut down next, how quickly the diaphragm, the hand, or the ability to swallow will deteriorate.

I still haven’t described “what it’s like” to have ALS. Here are a few analogies and examples:

  • Have you seen The Princess Bride? ALS does what The Machine purports to do: It sucks away your life. Unlike The Machine, ALS has no settings, but every time you go to sleep, you know that you will awaken either as disabled or more disabled that you already are.
  • In  May I could still lift my hands above my head to wash my hair; now I can lift my hands no more than a few inches above my lap. I cannot feed myself. And you are reading this blog post courtesy of a dear friend and colleague who offered to type it for me.
  • I feel during every waking moment that I am wearing one of those heavy lead blankets that are used to cover your sensitive areas during an x-ray! All movement is exhausting. On this day, December 21, 2015, I can still move my right knee a bit and wiggle my right toes in a barely perceptible way. I cannot straighten my fingers. My voice sounds as though I’m giving an interview after climbing K1.
  • I cannot scratch when I itch, I choke on water (I’ve had my feeding tube for about a month because I became unable to swallow my meds at night), and I cannot adjust myself in the bed. These are my least favorite things.
  • By the end of the day, I can hardly speak because my breathing apparatuses are exhausted. I struggle to be heard and so, work instead to cultivate my inner life. I am beginning to learn to type and use the internet with my eyes; however the learning curve is maddening, as is being primarily homebound and growing daily more mute.
  • By far, the worst part of ALS is the pain . Interesting enough, the death of the motor neurons and the atrophying of muscle is painless. Unlike cancer, kidney stones, and many other diseases, there is no pain emanating from the condition itself. Also, I have to say, nobody told me about the pain when I was diagnosed. As ALS patients’ muscles atrophy and their flesh melts away, they basically become bags of bones and skin, paralyzed in a wheelchair. For me this means constant lower back pain as my torso muscles become useless — certainly unable to support the weight of my upper body, neck and head. ALS visits its worst pain upon me at night. After sleeping on my side for a couple of hours, I invariably awaken with terrible pain in whichever hip is bearing the majority of my weight. The bone, you see, is pressing the flesh and I am powerless to shift or roll over. Imagine my thin layer of flesh that separates my hip bone from the bed as a peanut butter and jelly sandwich. Now imagine my hip bone, pelvis and upper hip as a 30-pound rock, and put the rock on the sandwich. Think about the way the rock will compress the bread and the filling. This is what I experience once or twice each night, so that I must wake my husband to reposition me…until whatever flesh against the bed wakes me again to protest being asked to bear so much weight with so little muscle or padding. I sleep when my exhaustion becomes greater than my discomfort! I only take meds at night and use as few as possible; life strung out on opiates is no life for me, although I certainly do not judge anyone for seeking the solace of a more pain-free existence.

ALS & OTHERS

This is the touchy area.

Sometimes I wonder what some of the most impressive personalities in the ALS community must think of me; I wonder if I’ve let them down, I wonder if I’ve let down my doctor (the amazing Dr. Richard Bedlack, the colorful and passionate director of the Duke ALS clinic and founder of the web project, ALSUntangled): He sponsored me to attend an ALS patient conference at which we patients would learn about the latest research and become advocates for our disease.

I am afraid I haven’t been much of a public advocate.

I still have more passion for saving public education, supporting public interest law, and getting money out of politics. These are the evils that permeate my world and which impact everyone. They are the scourges upon humanity I feel best equipped and most called to confront.

I feel embarrassed to ask friends and supporters to give money for ALS. Don’t get me wrong: ALS RESEARCH IS AN EXTREMELY WORTHY AND NEEDY CAUSE. Anyone who feels compelled should donate. Please.

It just that my having ALS does not, for me, make the disease a greater evil than it was before. To be honest, in my own life, pediatric brain cancers have wrought more death and destruction in the lives of people I know and love. How can I ask for money for a disease which is primarily adult onset while parents I know have lost or are losing their children to aggressive and incurable cancers, which also beg to be researched and cured?

I don’t know. I simply haven’t felt called to be “an ambassador” for my disease, though I hope my experience, documented here, will inspire some greater knowledge and focus on ALS.

Let me tell you what I really hate about ALS: It takes younger people too. Three of the most prominent ALS ambassadors are gifted young professionals with children under 10, and some as young as 3 or 5. It’s different for them than for me. I am virtually certain to see my children through – or almost through – high school; they will know me well and remember me as a complete person. For Jay Smith, Stephen Finger, and the utterly amazing Sarah Coglianese, things may be different, though I hope their progressions will all be slower (as they tend to be in younger people). If you want to see what passionate hope and advocacy in the face of terminal illness, visit Jay’s site here or Sarah’s tragi-comic blog Speed4Sarah where you can learn about the exploits of her now 5-year-old daughter Scarlett, their puppy Otto, and the excruciating journey from power-runner-super-mom to wheelchair-bound, voice-dictation-master who keeps us all laughing and inspired.

These dedicated folks have raised hundreds of thousands of dollars for ALS research. They fight for every moment of normalcy with their kids, from the sand tank wheelchair…thingy… that allowed Jay to walk on the beach with his family to the hysterically malfunctioning conversion van that helps Sarah attend all of the principal functions that the other preschool moms attend.

They are beacons of hope. They refuse to accept that their death is imminent. They deny ALS what I have always seen as its inevitable victory. I admire them greatly; they are passionate, compassionate, and effective advocates/fundraisers.

To be honest though, I cannot think of one project, one trip, or one visit with friends or family that I would trade in order to campaign for ALS funding. I hope, however, that this post might inspire some of you to write a check, if you feel so moved. You see, I cannot proclaim ALS to be more worthy of funding and attention than other illnesses, but it’s sure as hell not less worthy. I want Stephen and Jay and Sarah to be around when their young children graduate high school as much as I want the parents of the cancer kids I’ve known not to lose their children.

Before my 5 weeks in and out of the hospital drastically sapped my abilities, I had planned a visit to Boston to the ALS-TDI Research Center. I was going to participate in their tissue banking, a project to help them find the biomarkers for ALS that will greatly improve the odds of finding treatment or cure. If you’re so inclined, please write them a check.

I sometimes wish I could do more, but I know that we each must answer our own calling, and ALS advocacy simply was not mine.

ALS & THE ABILITY TO AFFORD BEING SICK

Let me start here by telling you about a local comrade-in-illness. Steve Reznick, a researcher and professor at UNC, as well as chairman of the board at The Farm (a swimming, tennis and activity center for UNC faculty, staff, and their families), was diagnosed with ALS a couple of months before I was. Like Jay, Sarah, and Stephen, Steve has been a passionate researcher and advocate for ALS. He has been honored by the university and The Farm for his lifetime achievements and for his grace and energy in fighting his disease. We adore Steve and his wife, Donna, who just completed the renovations necessary to make their home accessible, ordered Steve’s wheelchair (approximately $45K retail) and installed a lift to get Steve from the van into their home.

Steve’s team raised the most money in our local ALS walk this spring.

I tell you this story because my experience with this disease and with advocates like the people I’ve introduced above has made me acutely aware of the cost of being seriously ill. Those of us who hold benefits, travel to events, and blog – we are blessed with the resources to to manage life with ALS.

You see, all of us have been able to “keep up” with ALS. We’ve been able to “hit the curveballs” that this wicked succubus of an illness has thrown over our plates. I’m not saying that we are lucky — no one with ALS is lucky; but I think it’s important to remember, acknowledge, and address the fact that there are many victims of ALS (and other dread diseases) who are not nearly financially equipped to maintain their lifestyle in the face of their illness.

All ALS patients qualify for Medicare. If you are fortunate to have been employed or to have had private insurance through a spouse, you might even retain your private insurance as a secondary resource to pay a percentage of what Medicare will not pay.

But you would be astounded at what neither Medicare nor private insurance will cover.

If a patient is, for example, a middle-class single adult living in a 2- or 3-bedroom townhome, it is likely that the only full bathroom in the home is upstairs. A stairlift with any bend or curve will run close to $10K that no insurance will cover. Thus, the patient immediately loses access to his or her master bedroom, closet, and shower. Can you imagine?

And what if the townhome has stairs at the entry? Insurance does not cover ramps or other modifications to get the person in and out of their home. When I’ve asked about how these people cope, I’ve been told that they must convert a lower room into a bedroom and furnish it eventually with a hospital bed that Medicare will actually cover. “But how to they shower?” I ask. “Either they don’t, or they must use a cumbersome, zip-up, portable shower apparatus” I am told. And no, Medicare does not help with the portable shower, or, for that matter, the shower chair or other such hygiene products.

Thus we see “gofundme” pages for ramps, vans, and a plethora of other assistive devices that ALS demands but which our systems deny to provide.

Medicare does pay a percentage of the roughly $30K wheelchair, the $2K for your Hoyer lift to hoist you onto the toilet when your legs give out, and the collection of respiratory devices — ventilators, a cough-assist machine, and a suction machine — which the patient rents. Why rent? Well, each ventilator retails for about $18K. One of the most essential pieces of equipment, if the patient is going to maintain any normalcy as far as getting out of the home, independently shopping, or attending events (in my case my children’s theater and musical performances), is the wheelchair-accessible conversion van. New vans run over $60K. I bought a decent used one for $38K.

Insurance pays nothing towards the cost of these vehicles. Thus, for patients who do not have lucrative careers or significant savings, there arise many questions about life and debt: Do they raid their children’s college fund to buy a van and modify their home? Do they sell their home, uproot their family and downsize in order to gain a more accessible environment? Or do they resign themselves to being homebound in a limited space?

Perhaps the most shocking news to me was that Medicare and insurance generally do not cover “custodial care.” In other words, when an ALS patient becomes unable to brush his or her own teeth, cut food, eat independently, or toilet independently, the patient must either rely on family members or be prepared to pay for private care out of pocket. Imagine a victim who is single and without close family. I honestly cannot believe that in the wealthiest country in the world we allow citizens who are smitten with ALS to suffer or even fall into bankruptcy because we are unwilling as a nation to provide the necessary assistance.

It’s not just about money. It’s not just about sacrificing quality of life. The lack of Medicare coverage actually forces many ALS patients to forgo treatments that would prolong their lives. One of the most common procedures often suggested to extend an ALS patient’s life is a tracheostomy: By ventilating the patient at the windpipe, doctors compensate for the failure of the diaphragm and forestall respiratory failure. But here’s the thing, the trach requires regular nursing care to manage secretions and prevent infection. Without regular quality care, patients with a trach are more likely to develop pneumonia.

And guess what? Medicare refuses to assist with in-home nursing care associated with a trach. In Japan over 90% of ALS patients choose to have a trach and vent. Their national insurance program covers the procedure and maintenance. In the United States, fewer than 40% of patients choose the procedure. While some decline the trach for personal reasons (they do not wish to be ventilator-dependent, or they are perhaps aged and exhausted at living with the disease), many decline for financial and logistical reasons. In these cases, our unwillingness to care for these patients literally shortens their lives.

This past year Congress did pass a law requiring Medicare to cover communication devices for ALS patients who can no longer move or speak. These costly eye-controlled computers allow patients to maintain a voice, but this is merely the tip of the iceberg.

I don’t want this post to be about politics, however, ALS patients in countries with nationalized, single-payer healthcare systems simply fare better than those in the United States. It seems to me that “a great nation” would do better by its weakest citizens. We know, of course, that the majority of states refused to expand Medicaid despite the fact that the expansion would have been covered primarily by federal funds. These GOP-controlled states prioritized their spiteful disdain for the Affordable Care Act over their responsibility to care for the poor and weak. For the best explanation of this, google “John Kasich and Medicaid.” However much I disagree with the Ohio governor, I will forever admire his taking a stand against his own legislature to insist upon Medicaid expansion — to prioritize our society’s responsibility to care for the poor rather than to execute political retribution.

In conclusion, I have to say that even as ALS transfigures me daily into the “lump of flesh” in my wheelchair, I maintain a sincere gratitude for my situation. I have been blessed with benefactors who have helped me build a beautiful, new, fully-accessible home in a wonderful “green” neighborhood community right across the street from my children’s high school. I also have a benefactor who pays for all of my in-home care: Weekdays 7:30am to 10pm and weekends roughly 10am to 6pm. When the time comes, he’s ready to pay for 24-hour care. In addition to these unbelievable gifts, I retain my private health insurance from my years as a public school teacher, and the in-home care I receive allows my husband to remain gainfully employed. Thus — and this was my greatest concern — my children have suffered no major decline in their standard of living or in their hope for the future. ALS has not turned me into a pauper or into a homebound and limited person; I’ve been blessed with the resources to make the choices that are best for my health.

I only wish everyone had the same choices.

I’m not sure what happened to the notion that “there but for the grace of God go I,” but I would strongly suggest that you take a few moments to imagine, “WHAT IF?” — What if it were me or someone I love who was, by no fault of his or her own, stricken with ALS or some other dread disease? Ponder the possibilities and please, remember this story when you elect your state and national leaders.

~~~~~~~~~~

As I said, this will be my one and only ALS-centered post. As ALS forces my life to contract, I will be focusing more on my inner and spiritual life, as well as focusing virtually all of my communication energies on interacting with my children. In the two upcoming posts — the final two posts of this blog — I will once again detail some of the blessings this disease has brought me via old friends who have provided unbelievable help and support, as well as new friends — really “soul-matey” friends — who have connected meaningfully with me and supported me with all kinds of companionship and assistance. In other words, it will be a post more filled with inspiration and gratitude than this one.

I think, perhaps, that this is the reason I have been so reticent to write about my illness. Even in my worst moment of pain and frustration, I feel like my spirit is triumphant over ALS: I think about the death marches endured by victims of the Holocaust. I think about the almost unimaginable trials and suffering of the Syrian refugees fleeing their homes with virtually nothing.

And I think about Jesus of Nazareth nailed to a cross for hours, hanging in agony and in shame. Did you know that victims of crucifixion also die when they can no longer breathe? So we ALS patients are not alone; in fact, I feel quite comforted to be in such company.

Anyway, I really, honest to God, do not feel sorry for myself. And I hope you won’t either. Remember, we are all mortal. I don’t think that my illness is “unfair” — it just is. Furthermore, among those who suffer from ALS, I feel certain that I am one of the luckiest, and I do not fear passing into the next world.

And so, I wish you all the happiest of holidays as I move on to celebrate and make the most of my remaining days.

 

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11 thoughts on “The ALS Post

  1. Thank you very much for being such a brave woman and for sharing your thoughts and difficulties
    with this awful disease! I wish I could help you in some way! My prayers are with you and your loved ones this Christmas season.

    Liked by 1 person

  2. I applaud your honesty and your ability to share your story, I do believe that ALS is the most horrendous disease out there. I can’t imagine the suffering you have had to endure,, the pain and the heartache has to be gut wrenching, My cousin Kathy Degnan Jordan was also diagnosed with ALS, I did fundraisers and the ice bucket challenge, I don’t know that I could be as strong as the two of you and the many others who suffer as well. My love to you always, Sincerely Debbie Perna.

    Liked by 1 person

  3. Thank you for publishing your blog Vivian. I identified with you in every way. Mine also began with left foot drop. I do not feel strong and instead am fearful, actually terrified. Yes it is a disgrace that most in the USA 60% choose not to have the trach due to lack of coverage for care and sheer exhaustion from dealing with the effects. My goodness our feelings are the same as you described at night. I have not been able to stand since January 2015.
    God Bless You! I wish we could correspond regularly because it does help. Others cannot imagine! Merry Christmas!

    Like

  4. Pingback: Vivian Connell: Brave Spirit Explains ALS | Diane Ravitch's blog

  5. Thank you for the story of ALS and for your detailed analysis. You have touched me and I will pray for you and your family. My best, Debra Buggs

    Like

  6. My mother had the bulbar onset version of this wretched disease. Because she lost her ability to communicate early on, she was never able to share with us some of the details and the perspective that you shared here. Thank you for, however inadvertently, giving voice to her on what some of this is like. She was one tough cookie and it sounds like you are too. I just wish you didn’t have to be. Thank you for everything you shared – it touched my heart in ways you cannot imagine.

    Like

  7. Thank you for your honest comments, for sharing your personal story, and for your fantastic attitude and spirit. Your strength and perseverance are beyond description, yet as you said, we are not to feel sorry for you. And, I do not. Having said that, I will keep you in my thoughts and share your life’s herstory with others who may someday discover that ALS has occurred within their own bodies. I admire your contributions as an educator and as a lawyer. From a retired educator in N.H., respectfully yours, Will Thomas.

    Like

  8. Pingback: A Remarkable Story From a Remarkable Lady | Larry Lee

  9. Thank you for sharing this. One of my relatives has ALS, and now I feel like I understand a lot more how she is feeling. This was such a courageous post. Thank you for expressing this and my thoughts are with you and your family. I hope that you all enjoy this special time together.

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  10. Vivian,
    You have always been such an inspiration- pre and post diagnosis. Thank you for sharing your story- you are such a wonderful advocate for LIFE!!! Anne Monroe

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  11. You have the right attitude about this dreaded disease. Your contributions continue, even as your physical body is diminished . Continue your good work and thank you for posting such an inspirational message for those of us who have been touched by ALS.

    Like

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