The roller coaster never stops. Randy has been feeling quite well after a shaky start this year. In January he was hospitalized with the CMV virus, and in March with another virus. It has been a tough year for him as his father has been ill and in the hospital as well. Randy and his dad are very close, and it has been hard for both of them as they watch the other fall ill. They make the best of it, laughing about how they are the blind leading the blind, but underneath the joking there is concern and deep sadness for them both.
We flew to Cozumel on June 29th, and it has been a joy to watch Randy snorkeling, walking, and regaining strength after his long bout with a blood clot in his leg. The clot is gone, and Randy has been gaining in strength. Until yesterday. I went diving yesterday morning, and Randy sounded like he might be coming down with a cold or sinus. When I returned from the dive at 130p, I found Randy packed and ready to go. He had a fever, chills and was achy. I drove him to the airport immediately and put him on a plane to Dallas. The doctor wanted him to go straight to the ER at Clements UT Southwestern…and that is where he is now. Another virus, 5 days of breathing treatments, then home. I lost my iphone a week ago, and my internet is not working.
When we were desperately waiting for a lung transplant, all we could think about was getting those lungs. We didn’t think about the future because the present was as much as we could handle. The hope, of course, is that once the lungs are in and recovery has been achieved, life will go back to “normal”. In some respects it has…but for the most part, “normal” has changed. The challenge is Randy’s immune system, which is significantly lowered by the anti-rejection medications. He comes down with illnesses very easily. Everything one can see or touch is a potential source of illness. His new lungs haven’t had much difficulty at all, they have functioned beautifully.
So I am torn. Randy and I have discussed it many times. We agree that I should travel and do the things that we had planned to, and participate in the causes I am committed to. It sounds good, it is rational, an agreement reached by both parties. Randy will be well enough to do some traveling, and to come to Cozumel. But at the first signs of fever and illness, we have decisions to make. And though I know intellectually that it is right for me to take care of myself, to continue as best as I can doing those things we planned to do, there is a part of me that feels guilty. I feel responsible, and always have, for just about everything and everybody. And yes, I work at not feeling responsible. However, if I am honest with myself, and I am, I admit that I feel torn. I want to do what Randy and I have agreed to, which is to continue living my life. I spend probably 85% of my time with Randy, but it is a conflict knowing that he is in the hospital *and I know he will be fine* while I am in Cozumel diving, and heading on a Manta expedition in a week that I’ve had planned for months. And of course, if there is a hint of serious illness, I will fly home.
And so it goes, as the roller coaster takes a stomach dropping dip.
I wish your husband the best. And hope you continue traveling and doing everything you can because….but I sure understand how hard it must be to make those decisions.
Thank you so much!
These are very hard decisions and you and he are the only one who can make them. For him, the question is about the trade off. If he’s willing to trade length of life for quality of life as he defines it for himself and take more risks rather than fewer. For you it’s about how you will feel about the time you spent with him should his life end, if it would be enough, if you would have regrets. Chances are you will live longer.There will be many healthy years for you, God willing, that you will be able to what you love. For you the question is if the 85% will be enough in retrospect. I think each of us may think we know the answer for ourselves, but might not have that same answer in your shoes. Blessings to you both.
Thank you, Carol. Yes, these are all things to think about and talk about, and we do. He will be making more decisions after our daughter marries on October 3. Until that time, safety is the name of the game. He’s getting tired of “safe”, though there are activities that he absolutely cannot do, and I would fight him hard on those. We both know life can be short…and how many years of serious diving do I have left? How many expeditions and volunteer opportunities are left for me? We do a lot of talking.
Kudos to you for modeling how to have those hard conversations. My terminally ill BFF and I talk a lot about this. I always tell her when she says how hard it is that it is her choice if she wants to stop, that no one would fault her for it, that she has defied the odds already. So far she wants to continue to fight but after 5 years plus, it is getting old and wears on her. But whatever she wants, we encourage and we do talk about it when she wants to. These are discussions that are best had honestly. Never underestimate how much you and Randy are showing us the way.
Keeping a positive attitude is essential to me so far, but I also know the realities. So does he. I’m very sorry to hear about your BFF. That has to be terribly hard. I feel for you.
Such hard choices! If you can enjoy yourself or not?Tough decisions. I wish you both the best.
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Thanks Haralee. Hard choices but they are fluid decisons. I wouldn’t leave him if he was seriously ill. These viruses, I think, are just going to be a part of life. We plan to go to Europe this December…but there are many stellar lung transplant centers there. Mexico…no, I’d rather he was in Dallas, and he does too.
Hi Tam. When I have worked with people who either have chronic illnesses or the folks who love them, they tell me stories just like yours. How do you begin to make decisions around things in your life that you have to change because of the impact of the illness. Things that change the dynamics between you as a couple. That seem unfair to one. Especially the one who is not ill. It sounds like y’all are right in the middle of that. All I can say (and I have dealt with this myself personally as well) is that it can be worked out. Carol’s comments are thought-provoking. Deal with more of the life and death aspect of things. I think I am coming from more of what all of this does to the relationship. You want it to end bringing you closer together, not further apart. Good luck to you.
We deal with both as I have chronic conditions as well. One also has to consider the relationship and our history to make these decisons, which are always flexible. We just have to deal with each situation as it comes up. He is supposed to go home today, he feels great, so I am off on my expedition on Wednesday. He wouldn’t go with me if he was perfectly healthy as these volunteer science trips aren’t his cup of tea, but they mean a lot to me. See my reply to Carol…yes, these are all a part of decision making.
Oh, Tam, my heart goes out to you -these are tough decisions all the way around. I’m certain that by chronicling your journey you are helping others in theirs. Thank you for your honesty and your willingness to open your heart. -Veronica
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Thank you, Veronica. I hope we are helping others while on this sometimes painful journey. All decisions are fluid and ever changing, due to circumstances. If there was a question about his recovery, I would be home with him, of course.
I’m grappling with something similar- my mother’s in a nursing home, 1600 miles away, and even though my sister is there, shouldn’t I be doing more? Visiting more? More phone calls? Should I send little pick-me-up gifts? Should I move back temporarily? How can I help? Or do I have to accept the fact that I won’t be there? Life. It’s a bitch in high heels sometimes. I dearly hope your husband continues his recovery and that you can both find a peaceful and meaningful balance.
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You are so right…it can be a bitch in high heels, well said. We make the best choices we can…have you talked to your sister and mom about it? What do they want?
My thoughts and prayers are with you both during your difficult journey. My hubby is sick too so I know how hard making decisions can be. At the end of the day, you both have to be happy with whatever you decide to do. I wish you both health and happiness along your journeys!
Really tough decisions, and I feel for you. I have friends who completely put their lives on hold for their husbands with longterm disabilities. I mean, they have barely left the house. While I admire their devotion, I’m not sure I would do the same, although of course I would make sure my husband had the best care in my occasional absences. But I guess the bottom line is you just don’t know until it happens to you. I wish you peace and I wish your husband better health.
Everyone has to find the best way for them…and both parties need to understand the other in order to make good decisions…and decisions are flexible. Randy gets ill…but we don’t consider him disabled. He is active and well for periods of time. He went home today and went out with our daughter for TexMex!
Thank you for articulating the difficulties of your specific situation. This will be helpful for others negotiating similar (but certainly not identical) situations. You are a smart, caring, creative person. All my best to you as you and your husband take things one step at a time for good health and a good relationship and for good support for each others’ endeavors. Gentle hugs to you both.
Thank you, Karen, for your kind words and good wishes! And Randy is home today!
I am so sorry you have to make these hard decisions. It sounds like your love for each other will help guide you during these difficult times. Whatever you do, make sure you take some time to take care of yourself as well.
Thank you, Estelle.
Oh, Tam, I’m so sorry you have to make these decisions at all. Trust your judgement and take care of yourself as well as Randy. I hope the rollercoaster is on its way up – and gets stuck at the top.
Thank you for the sentiment! I love the idea of it staying at the top!