Just Delivery

If you are paying attention, recall that I have written of how ALS circles around, how just when a suitable strategy for dealing with the current reality emerges, how just when the day to day living becomes something routine enough to handle, how just when comfort in the new normal is almost old normal; one more piece falls away, and the circle morphs into spirals down and down. I have written of circles delivered in packages sparkling with new knowledge or laden heavy with despair, packages complete, with no room for negotiation, no space for discussion, no rejection, no acceptance. I have written about how circling back is not for the faint of heart, for even today, five days after the event, with visits and dinners with dear friends and time with family in between, with the opportunity to physically process and psychically work through the latest loss, I am still amazed at how insidious my dis ease teacher can be.

It was the smallest of things.

I just finished a phone conversation with the editor for the MDA ALS newsletter. She had suggested that an occasional sampling of this blog might be good for persons and caregivers in the ALS arena. You may or may not realize this, but I am sensitive to anything that might be perceived as me speaking for more than me. It is not my intent for this blog to represent anyone’s experience but my own, for that is the only experience for which I can claim any deep knowledge. So I was concerned that in sampling the blog, I might be seen as overstepping the boundaries that I have set for myself. Such boundaries weigh heavily, and I take them very seriously. I am also very aware that for a number of people who read this blog, these descriptions of my experiences are close enough to their own experiences that voice is given where voice might have been silent. In the end, I agreed to the sampling due to her understanding and sensitivity to my concerns. It was a nice conversation.

And then…

My phone is on a piece of Velcro that sits on the right arm of my power wheel chair. It is not the most ideal placement for a phone. Sometimes when it rings, I have great difficulty getting my arm twisted around to slide the unlocking mechanism and answer it. Other times my arm is resting over the phone so that it is totally inaccessible. Usually I try to hold the phone so that I can point the microphone toward my face, as I lack the arm strength to actually bring the phone up to my ear. All of this is to say that were you in the field of risk management, you probably would have easily predicted some minor disaster with the way that I do the phone. Five days ago, I was just weak enough after the aforementioned telephone conversation, that as I tried to place the phone back in its right arm position, it flew over the side of the chair. In my effort to keep it from falling to the floor, my right arm became wedged behind the chair’s arm.

And there I sat.

This has happened to me before, so I didn’t panic. Instead, I tried all manner of ways to get my arm back on the chair. I tried turning my upper body, grabbing the leg guides with my left hand and pulling myself forward, flipping my right arm out and forward, even quasi-fishing my hand up with the seatbelt in order to get it back on the arm of the chair. After about 10 minutes, I realized that I was actually in real trouble. My arm position meant that I could not change the position of my body, which was leaned in just the right way as to constrict my breathing, and with it being my right arm, I could not reach the controls for the chair. I could feel my hand and forearm swelling with the gravitational pooling of fluids so that my fingers would not bend, and awareness slowly bloomed into the full consciousness that I was caught, trapped, unable to breathe deeply, unable to move, unable to perform the simplest of acts.

I watched the time tick forward, one minute, five minutes, one hour. Every once in a while I thought I heard someone walking in our building, and at that point I would yell as loudly as I could, “Help, help, help, help!” I soon realized that this yelling was pointless. It was just tiring me out, and making it more difficult to yell when the time might be right.

So I waited.

An hour and one half after my arm’s tumble, I heard the UPS truck pull up, I heard the rolling door clatter open, I heard the deliveryman come into the building, and I held my breath. Would he bring the package up to our condo? Would he ring the bell and dash off as he often does? Would he come to my floor, to my side of the building? I knew that I couldn’t allow him to get away. I started yelling, and when the doorbell rang, I redoubled my efforts, yelling at the top of my voice, “Help me, help me, please open the door and help me!” And this very kind man came rushing in, “I’m here, I’m here. Tell me what to do.”

I’m sure he was puzzled that all I needed was my arm lifted back onto the chair. I’m sure it seemed like such a tiny thing to him. I’m sure he had no realization of the relief that he offered, breathing and mobility and comfort. But he did it, and I spent the rest of the day seeking some equilibrium. My hand was quite swollen and did not want to operate the wheelchair controls. My body overheated with the exertion of trying to free myself, yet once I was free, sweat evaporated into shivering, teeth rattling, frozen to the core coldness. And when Ev came home, I was so relieved to see her that I burst into tears.

Welcome to the new normal.

Today, I know that our plan, our strategy to try to get me through to the summer at the level of care I currently receive, is not going to work. I am just too helpless, and I hate it. From now on, I need to make sure that somebody is around, at least checking in, just in case. In essence I have turned a corner into a new level of ALS. It seems like just yesterday I had chosen to begin walking with a cane. It seems like just yesterday that I gave up driving. It seems like just yesterday that I accepted that I needed homecare assistance. And today, I have to accept that the assistance that I need is far more significant than the assistance that I want.

I have no words of wisdom or philosophy, no frameworks from which I can turn these cold truths, no spaces of healing or warmth or acceptance from which I can approach this new reality. It will come, at some point it will have to come. But today, I am just shaken up by how easy, how fragile, how fleeting this gift of living is.

And that is quite a package to have delivered.

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13 thoughts on “Just Delivery

  1. Bruce – Thank you for having the courage to share. You are helping me learn what it will take as my adventure with ALS continues. Stuart

  2. Oh Bruce, what a terrifying experience for you. I can’t even imagine. Thank you for sharing such raw life experiences. We able-bodied folks take so much for granted. I pray you and Ev will find a caregiver or companion—maybe a fellow writer or retired person—who will enjoy hanging out in your beautiful home in order to ensure something like that does not happen again.

  3. First of all, your reflections on your journey are always profound…to me, TAB that I am, and I can only imagine how resonant they are for those folks that share your dis ease.
    Your description of this very frightening episode is so poignant. I think most of us try to imagine what we would do faced with an impossible situation, maybe even a life threatening one. You were active in finding your own solution by realizing you needed to conserve your energy for when it would actually bear fruit. And it did! The UPS man was surely a God-send. Bless you, Bruce, and your ever-active, life-participating self. I am sure you are hero to lots of people…as you are to me.

  4. I would say that delivery man was a life saver. When every minute ticked slowly away, and you were living by seconds, he responded to your cry and was wise enough to ask you what he could do. Thank goodness the package was for you.
    And, Bruce , as serious as this incident was, and it was heart-wrenching to read, did you, at any time, think of John Candy in Planes, Trains, and Automobiles? And, if so, did you laugh just a little. I hope so.
    After Edina schools are out, I will be out of work for the summer. I hope to see more of you and Ev, and to be of service. Love you both.

  5. Dr. Kramer,
    You don’t know me but I know you. I’m a UST Ed.D. grad and didn’t have the opportunity to take a class with you — so many classes and so little time — but learned quickly of your reputation from your faculty colleagues. I’ve followed your MPR interviews and your blog entries. You are the most courageous person and a brilliant writer. I’m so glad you have a terrific wife and the support of a wonderful family. You remind us to find the joy in every day. Thank you for sharing your experience. Prayers of strength for you and your family.
    Barb Mollberg

  6. My heart aches with what you are going through. It isn’t that I feel sorry for you. I know my father had to go through some of the same things having succombed to luekemia in 2008. Going from vibrant, busy, able bodied men to various stages of ability is hard to watch for us on the outside. Living with the changes, even more difficult. My thoughts and prayers are with you and Mrs. Kramer. Thank you for your willingness to share your journey with me. I consider it an honor to read this blog on Dis Ease!

  7. We are with you in spirit, Bruce and Ev. We have no magic words, but sure wish we did. What a difficult, difficult experience. We send our love. And hope. And prayers.

  8. What a terrifying experience for you, Bruce. I don’t believe that anyone without ALS can actually understand fully what a person with ALS is going through. You you can read about it, you can sympathize, but it’s really not understandable to most of the rest of us. The closest I can get is reading your blog. You are truly
    an amazing person. We keep you in our prayers. Alice & Don

  9. It is so refreshing to have you truthfully share your story and your feelings in the moment. God bless the UPS delivery person! Life can shift in the blink of an eye. I have been living with ALS for 10 years and have had those moments of panic and waiting on the floor until my son or husband came home. Or as soon as everyone has left home, I realize that my computer and phone are both temporarily disabled and I have no way to call for help ~ tests of patience!
    It is now what you do with this info going forward. You can deny it or you can continue to humbly ask for assistance. I have a group of friends that I email each week with scheduling requests. Friends are amazing to volunteer time to visit, help with tasks and check in on you. I also currently have 3 home health aides for a few hours a week. You would be amazed at what people are willing to do, if only you can hold in your pride and ask for specific help. You can rig up a lifeline alert button for your knee, etc. …
    Thanks so much for your eloquent writing and sharing your experience! Embracing vulnerability is a very courageous act.
    Blessings, Gae

  10. Hi Bruce,
    My friend Mark who also has ALS had a very similar incident occur as well as several others including once getting stuck out in his attached garage during a bad winter storm as he lost power to the house and could not get back in as the electric ramp he used to get in and out wasn’t working due to no power and he didn’t have anyway to contact anyone so he had to sit in the cold garage until his wife got home. I think shortly after this he bought a voice activated blue tooth which included an emergency response activation number. This may be something you may want to consider. Thanks for sharing your experience and thank goodness for the UPS guy! Take care. Debbie

  11. Bruce, I am moved by your continuing story. I am also in awe of your writing ability. So I must ask , are you working with someone to turn the postings on your blog into a book?

  12. Dear Bruce and Ev – this story seizes my heart with remembrance and outrage. I wish I could have somehow magically appeared to help you. It has been 16 days since my dear sister, Joan, was taken away by the unfairness that is ALS. You have helped her and our family by sharing your own journey – your words are your words but they speak so much more broadly than you might imagine. Thank you for every word. If I can be of help to you, please let me know. Love, Sandy

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