As I commemorate the start of a new year, it seems a good time to look at the past year and launch some resolutions.
A new year? Resolutions? Really?
Really. For me, anyway. Today is my birthday, and I celebrate making it through a difficult year, one full of the challenges and problems of ALS: I have lost dexterity and abilities and independence; I have felt nearly unbearable depression; I have railed at the unfairness of it all; I have put a heavy burden of care onto my husband’s shoulders. But I have made it through, and have found elusive but very real cause for celebration: the knowledge that I can face dire challenges and adapt and overcome; the wonderful, invaluable support of husband and family and true friends; the companionship and understanding of other pALS; the hedonistic luxury of having someone wash my hair every day.
The coming year, I'm afraid, may bring fewer reasons to celebrate and more reasons to rail. There are, after all, reasons why ALS is called "degenerative" and "progressive." But there are also reasons to look for the best while acknowledging the possibility of the worst. That is pretty much, I think, what New Year’s resolutions are for – and why my resolutions are taking form as an examination and re-evaluation of my Bucket List. The bucket is still pretty full, but it's time to apply some ruthless practicality to the contents.
1 – See all my grandchildren. Two vacations, one to New York and one to Minnesota, fulfilled this wish. I was able to spend invaluable time (too little, but invaluable) with all the wonderful grands. I discussed college plans with the oldest. I watched the first wobbly venture on skates of the youngest. I chatted and read and played games and looked at pictures and took pictures with all of them. And I wept bitter buckets, knowing I will not get to see them grow up. I hope they will remember me, and know that I always, always love them.
2 – Travel. This item on my bucket list needs lots of editing, but it still is a resolution.
2 A – Europe and points beyond. I would love to visit London, to see Paris. I have wanted, for years and years, to spend time in Italy. Turkey, India, New Zealand… So many places call me – and I won't go. Long-distance travel has become just too difficult and too tiring, both for me and for Scott. So we cross this off the list, and watch lots of Rick Steves on PBS.
2B – See an Alaska glacier. Another no-go, I'm afraid, for reasons mentioned above. Oh, I know that lots of large luxury liners have excellent handicapped accommodations – but a large liner is not what I want. I want a small ship cruise that gets up close and personal with the land, the animals, the people… and the glaciers. But small ship cruises, both the ship and the activities, are far too adventurous for a couple of old gimps. Good-bye, glaciers.
2C – Local trips and mini-vacations. I know that any kind of travel is hard for Scott, even a day trip to the City. But I am so terribly loath to give up the wonders and beauty of in-your-own-back-yard visits. I want to see the wildflowers at Anza Borrego. I want to eat oysters at Tomales Bay. I want to spend Christmas somewhere that isn't home and doesn't carry so many memories. I think we can do this – at least on occasion.
3 – Get my tomato book published. The book is done, the submission material is written, and one try has already been made – and I have the rejection letter to prove it. Now what I need is better research, tighter formatting, and lots of big envelopes. Get off your duff, Peggy, and do it!
4 – Have an art show of my ALS paintings. As with the tomato book, this is a project partially done and left hanging. I have researched Bay Area galleries and obtained submission guidelines, I've taken photographs and written descriptions, I've written my proposal letter and artsy CV. It's now time – or past time – to stop planning and start doing. (I really want to do this show as an ALS fundraiser, donating part of my share of sales – and hopefully part of the gallery's, too – to research organizations and the ALSA. If anyone out there knows an extremely altruistic gallery owner in the San Francisco area, please tell me!)
5 – Volunteer. I would love to do something productive to help the local chapter of the ALSA. I have offered my assistance a few times, with no response. I guess it's time to get a little more emphatic.
6 – Go to events. I'm not ready to be completely housebound, not quite yet. A baseball game. A football game. The opera. A play. Museums. Parks. Hokey little local festivals. Who is up to going with me? Scott? Debra? Anyone?
7 – Adapt to my limitations. This is going to be a biggie, in more ways than one.
It's going to take a big change of attitude. I'm going to need a wheelchair, probably sooner rather than later. And not just a little fold up portable model, but a big Momma super deluxe SUV of a wheelchair with all the bells and whistles that a person with ALS needs. Admitting that need is going to be difficult, making the adjustment, physical and psychological, from walking to wheelchair-bound will be hard. Wheelchair-using friends say a power chair is liberating and gives you great independence… But I just can't see it that way, not yet.
It's going to be big financially: while Medicare will probably cover the expense of the wheelchair, it's up to us to pay for the bathroom remodel, the bedroom remodel, the ramps, the handicap van – and everything else that will come up.
It's going to make a big impact on our personal lives. I will need more and more help from Scott, and, as things get worse, from a professional home health aide. I will eventually need a full-time caregiver, so there goes our privacy. There, too, goes a lot of our money. And there go a lot of items on this resolution/bucket list: if I haven't done them but the time I get to this point, they ain't gonna get done.
8 – Make my final plans. The will is done, so we can check that off. My end care decisions are all written out and understood by my doctors, husband and family – and, I think, by me. I know what I want done after I'm gone, and so does Scott. All I have left to do is write my own obituaries and worry, ceaselessly and ardently, about my wonderful husband and what he will do when I die.
9 – Live and die on my own terms, as much as is humanly possible. I will keep running until the final tackle.
10 – Realize that I am not alone. I will accept, with gratitude, help and support from any quarter. I will try to give support whenever and however I can. I will remember that these resolutions are not only mine, but belong too to my family and friends and, most of all, my husband, whose wishes , needs, limits and aspirations are as close to me as my own.
