7-3-12/You (likely) Don’t Know How Hard This Is

I posted the below entry on my “Post-Transplant Feelings” page. However, thought it was an appropriate entry for today. 

 

I am very unhappy with how I feel and how others are handling me at the moment. Someone told me today that I least that “didn’t take my sense of humor.” I responded with “not yet.”

 

Readers’ beware. I am not in a good place. I thought writing this would be cathartic enough, but I feel I would be remiss if I didn’t publish it. I might decide to take it down later, I don’t know.

 

First, most people, thankfully, have no idea what either I, nor my family, is going through. I hope you never do. The ones who can are likely in later stages of life or facing a more imminent and dramatic ending sooner than later. In some ways, I envy these people the most – they know it will end and how.

 

People I talk to try to justify it. “You can handle the pain.” “We’re here for you.” You’ll get through this.” “Focus in being healthy in the end.” Name the cliché, and I have probably heard it. It doesn’t even bother me that they are cliché – it matters that people say it. I would much rather someone calls with something than not call at all. More on that in a second. On the first point, these words do help on some level, but rarely seem to take account of the entirety of the situation.

 

That is the problem you see – the entirety of the situation.

 

I am not just bitching about being in horrible pain here – for those that think I should be a tough guy. There is more to the story than that. Guys who tell me things like that often brag about never, or rarely missing a day of work  – do they even know what it’s like NOT TO BE ABLE TO WORK? How debilitating, frustrating, financially difficult, etc. that is?

 

Here are the problems in no particular order:

 

  1. Pain
  2. General Uselessness
  3. Specific Uselessness (work, personal, etc.).
  4. The Unknown/Lack of a Mental Break

 

First, the pain, in my mind, is mostly manageable. Yes. However, it is not pleasant at all. It often involves being poked and prodded in humiliating ways (often by people who have never known that pain) or is so dramatic that I can’t think about anything else. If it’s not one of those, it’s merely constant, but tolerable. However, that kind of pain is the worst, it just drags on and on and is physically and mentally draining on levels I cannot fully communicate.

 

Secondly, general uselessness. I fight with older people about helping them out of a chair, a car, etc. I NEED THAT HELP NOW. I know it’s embarrassing, but it’s better than sitting in a car for ten minutes until you can muster the strength to get out. Anything I try to do involves pain and I can’t help cook, clean, carry anything, etc. All I do is take up space.

 

Specific Uselessness. This is the worst. Not being able to do general things you should be able and used to be able to do. I can’t work because I can’t sit at a computer long enough or be out of pain long enough, or a combination of, to get anything done. I am also severely depressed and not in my usual gung ho mood. This is problematic. First, I feel useless. Secondly, I am essentially useless to the company that is standing behind me and being supportive. Third, I work mostly on commission, being in the finance industry.

 

I am going on 6 months of being in too much pain/discomfort, or literally unable to work, and therefore not nurturing relationships and not getting paid on work production. Yes, I have a job, I have residuals, and most importantly, I have benefits and the ability to work when I am able. I did get more done in the past 6 months than I thought I would. However, little affected income, more was tying loose ends, doing my basic work, and keeping things together. In other words a kidney transplant alone buts a financial strain on someone in my position, as does kidney disease for years – the second surgery did not help this.

 

On a personal level, the surgeries and mental anguish create more problems. It is very hard to be a good husband right now. Even though Maria tries to be there for me, I make it very difficult. On top of that, it hurts to try to hug/cuddle, let alone make love. So there is a lot of negative and little positive contact to offset.

 

Finally, the unknown. At this point, I have no idea how this will turn out. Each problem that comes up involves more questions than answers and they KEEP COMING UP. Since before the first surgery, there were questions, many of which are still not answered. That weighs on a person. Heavily. They said the first 3 months would be hard – almost done with that by the way, but even “they” are surprised at how hard this has been.

 

All this put together make a situation that is difficult to comprehend and even harder to overcome.

 

Now that I have said that, I am going to rant. This is focused on those who have been anything but they’re for my family and me in these hard times. Something I do not believe I would have done to them.

 

By now you have read the above – this is difficult, difficult, stuff to be dealing with. This is when someone needs the relationships he has developed. This is one reason people develop relationships in the first place.

 

I know some of you were there for the first surgery, and I appreciate that. However, despite your belief that I am an old hand at this – PRACTICE REALLY DOESN’T HELP IN THIS SITUATION.

 

To the ones who didn’t bother at all for either – WTF?

 

I guess it just wasn’t convenient for you, or it was hard to make time, or it was hard to decide what you should do. Guess what? THIS IS NOT CONVENIENT FOR ME. For those that think all the above, or spend more time coming up with lame excuses, I don’t want to hear them anymore. In my experience people spend more time and energy coming up with excuses for not doing something that is right than they would if they had just done it in the first place.

 

On a positive note, and not losing perspective here, overwhelmingly people have been supportive, understanding, and there for me. Many in ways I felt exceeded what needed to be done. That is the majority.

 

However be warned, if you think everyone else is going help and pick up the slack – you will likely be sorely disappointed. It can dangerous in these situations to count on anyone unconditionally – there needs to be back up for back ups or you need to be prepared to do it on your own.

 

Frankly, I am shocked, horrified, and saddened by how much of this I ultimately had to do on my own. I figured there would be more support. In some ways there was, in other ways, I was let down, and in some ways, the belief was unrealistic.

Comments
7 Responses to “7-3-12/You (likely) Don’t Know How Hard This Is”
  1. Jana says:

    David,

    You are right… no one can know exactly what you are going through, not even those who are going through it with you. All I can do is say I’m sorry that you are in so much pain…physical and emotional…and that I hope you can ride through the storm with hopes that it will all be a bad memory from the past. I pray that you will have a very long life to share with Maria (and kids : ). Josh and I love you very much. Praying for your speedy recovery!

    • dakski says:

      Thanks for being able to see where I am coming from and acknowledging how difficult it is.

      Frankly, that’s what I ask for. Give me some validation instead of trying to justify it for either me, or yourself.

      Thanks again and much love back at you.

      David

      • Gail says:

        Hi, David. I am sorry it’s not going better right now. What would you like us to do? I have time tomorrow after my car gets out of the shop…probably after 11. …just let me know. Friday is jammed packed. I finally, after 6 months of unemployment, got a job, so I am fitting in a bunch of appointments to doctors, etc. on Friday. Then John and I are going away to Maine for a week. I finally feel like I can take some time to put my feet up and play. I wouldn’t allow myself to do that while I was looking for work, so now is the time. I am going back to work for my “old” home care company, but out of their Danbury office this time. I don’t know the clients, but I do know the job, so it will all work out.
        Do let me know if there is something I can do tomorrow. You know…you just have to ask…we don’t know what you need.

      • dakski says:

        Gail,

        I understand it’s not an easy situation and think asking what I need is both totally appropriate and necessary.

        I am so relieved your work life is improving! We were worried for a while, as I am sure you were.

        Enjoy your time away – you deserve it – and we’ll talk when you get back. I am at Yale most of tomorrow for tests, so may not be able to get in touch with you then.

        Take care and be well.

        David

  2. Rebecca says:

    Hey David!! thinking of you and hoping things start to get better for you!!
    Rebecca

  3. rayelle02 says:

    Hi David. What a great idea writing a blog! This is a first for me. What a grueling path you are going through. Marc and I have been communicating through mom’s very informative emails, but I know that you are feeling isolated and down. Writing this blog is such a wonderful way for you to express yourself, not only for you, but for those who can’t be there to visit. We are so hopeful that you will be feeling better in the near future, and are sending hugs and positive thoughts your way.

  4. Joshua Zager says:

    David,

    Great blog! I’m thinking of you every day. Keep up the good work and much love to Maria.

    Love, Josh

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