This entry is from The Lovely Wife.
1. It’s mid-January, eight days post-diagnosis. BH wants to record his time for the 100-meter dash, so under the grey sky we’re jogging around the high school track together. Then we split and I go to the end of the straight-away; he lines up at the other end. I raise my arm into the air as he gets set, I drop my arm and he’s off! BH starts with a burst, and then I see the drag to the left, as though a stiff leeward wind is pushing him sideways. BH’s right leg and arm, still strong, sinewy, slow down just a tad to let the left leg and arm stay in rhythm. In 16 point-something, BH crosses the finish line.
2. BH wants me to race him in the 400-meter run. I think several things: I’ve just eaten lunch; I’m still nursing our one-year-old baby and carrying extra weight; I know he used to beat me in the 400 in the past; I don’t want to be beaten by him today, and I don’t want to beat him today, on this day of recording and reckoning with the truth.
3. We’re out for an Indian dinner on a Friday night, pre-diagnosis, with our baby girl in tow. Our son is elsewhere, enjoying an evening with his best friend and their former nanny. Among other things, I recognize a teacher from the middle school sitting at another table. BH and I are talking, eating, drinking -- sploosh! A throatful of water sprays out of BH’s mouth and across the table into my face. I feel humiliated, though I know it was unintentional. BH apologizes. We don’t yet have any idea what it means, or that it means anything.
4. Maybe a month post-diagnosis, BH and I want to get some exercise, but our 4-year-old son is home from preschool. We decide to take him in the jogger-stroller. I tire pushing his 43 pounds around town, but BH finds a small hill and sprints up, pushing the loaded stroller in front of him, faster than I want to go even without the stroller.
5. One of many attractive things about BH is his voice -- warm, jovial, resonant, quick in wit and scorn. I hear a new layer of nasality, airy, less grounded. BH has expressed to me recently how his slowed tongue and sometimes slurred speech frustrate him, and how infuriating conversations on the phone with “customer service” are: those who serve always want to rush ahead, finish a sentence for him, try to solve his problem before they’ve let him finish his description of what that problem is. BH’s strategy in the face of such interruptions has always been to start again at the beginning of his thought, exact a tax of having to hear the whole explanation again. Only this time, BH has to suffer interruptions again in just about the same spot every time, and he cannot finally get his whole thought out. Soon he hangs up in disgust.
6. Mid-October 2005, a Saturday morning, we’re going as a family to the Fire Department Pancake Breakfast and Open House. We’ve found a parking space in the lot near the fire station and have safely, slowly, wound our way past other cars to the entrance nearest the pancake line. We walk down the brick sidewalk to the ever so slightly slanted bottom of the driveway. There’s a one-inch drop-off; I’m just turning around to say to BH, “Watch your st-....” BH’s right leg, the now “stronger,” but not “strong,” leg, doesn’t feel the ground just where he expects it, the slight difference in elevation throws off his balance, and his legs go out from under him. He lands on his butt and back; luckily he doesn’t hit his head. BH has just arrived at the fire station looking like an A.M. tippler. He gets up and limps into line with us. I know he doesn’t want me to rush to catch him as he’s falling; he also doesn’t want me to rush to pick him up. He wants time to recover from the shock of the fall. But I wonder what kind of impression this is making on our kids, that Mommy doesn’t run over to help.
7. In bed BH asks, “Can you move my left leg?” I reach around and grasp his left ankle and foot, and I’m shocked, horrified. BH’s left leg is cold, not even clammy, just reptile-cold. BH, who has always been a furnace, with warm hands and cheeks in even the coldest weather, has a limb that feels like death.
8. For BH the house feels colder these days. He wears his thickest padded corduroy jacket almost constantly. He limps slowly, speaks slowly. His angular facial features and his dark-brown eyes, his gait and stooped shoulders and veined hands, all remind me of my grandfather -- in his nineties.
9. BH and I walked to our neighborhood polling place today, two blocks away in a city park. Our daughter rode her tricycle with us. We walked in together, then got split up in line by a cell phone call I somehow couldn’t end. BH finished voting first and left to wait for us just outside. I came out and said I would stay at the playground with our daughter for a little while, so BH decided to walk home alone. We watched him go past the green lawn, past the basketball court, and up to the pool building. There he had to lean against a wall and rest a minute before continuing to the end of the first block.
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My deepest sympathy goes out to you, TLW. Over the past few weeks I've been reading BH's blog from the very beginning, something I had only done in snippets before. I wish I had known him sooner. Even though he was the one writing, your personality shines through and it is a beautiful and loving one. This just confirms that. Thank you for writing.
Thanks for sharing these memories with us, TLW. You and your children must miss him so much.
We, mere strangers, who shared his journey via his blog, miss him and still check here regularly.
I hope the good memories of BH bring you some comfort.
Deepest sympathies
jmb
thanks for sharing this
-mark
To keep memories alive is to rob death of some of its power. I think of you and the children often although I won't know you if you were to stand in front of me today. But I am now where you were several years ago, and I watch Mesothelioma inch its way into our lives and I want to close the door to the Angel of Despair knowing I won't be able to, and I am writing as much as I can. Every little thing, every nuance, every moment, every little memory. In time, it is all I may have left. Thank you for this, it has all the fragrance of love.
I am so sorry for your loss.
Thank you for sharing. Thinking of you and your children.
Janet
Thank you for sharing this with us TLW. We are missing him too.
LAM
TLW,
Your love for BH is so strong, so evident, and his likewise, that I find myself amazed at a love so strong. No one can choose all that life throws at us; in BH's death, your love is profoundly beautiful and awe-inspiring. Thank you for sharing.
Thank you, TLW and Ron. I hope you will share more with us.
I am slowly rereading BH's blog and I often think of him and his loved ones.
Sending good thoughts your way, now and always.
Josephine
Ron--Thanks for posting TLWs memories of BH. How surreal it is to read these snippets that reveal what the first few months(?) of symptoms were like for BH. No one could have known then what it they were leading up to or fast it would come, how much time he'd have left.
TLW, I think of you and your beautiful children often and I am wishing you peace. Thank you for sharing with us these precious memories that show how strong he was in fighting this illness, and how strong you were in adjusting to the changes he was going through. That strength will hopefully carry you far in the coming months.
hugs.
Hugs to TLW and the children. I'm so sorry.
Thank you for sharing those experiences. Please know that BH and his family remain in my thought & prayers!
TLW, thank you for sharing this. I think of BH often, being touched by the effect of ALS on a close friend of mine who passed before BH.
They are not forgotten.
This is very heart-wrenching. Thank you for sharing it, though. I wish you and your children peace and the happiness that I'm sure BH would want for you.
TLW - I had to take a while after reading your words before I could write my comment. I do not know how to voice what is in my heart. I have such depth of love and emotion for you and for your children. I feel so lucky to be able to read your words ... to get a glimpse of you and your life with BH. Thank you for the time and effort it took to put those out to us. It means a lot. I cannot imagine the effort that even small things must take these days. You are surrounded by love, strength, and abundance. Take what you need. We are here. Can't help but think of you and BH as I head to bed, and the house and my mind are calm and quiet. Sending you love from Colorado. -Holly
I am missing BH so very much today.
why did you stop the blog?
Hi there,
Didn't mean to stop the blog. Just ran into life head on for a while (my stories, not BH's).
Will post something soon.
Ron
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