Honestly? I’m struggling…

I’m going to just come out and admit something. I’m having a tough time. I don’t want to spend a blog post whining but, I said I’d be honest in my writing so I will continue that pledge.

It’s been six months since I got my life-saving liver transplant and I am very, very thankful. Life, however is different now. I’ve gone from being a guy who lived a fast-paced life to a guy who sits with his dog at least 60 hours a week. I’ve gone from having a full calendar to knowing when “my shows” are on. Yeah, I have shows. I’ve gone from a full house and being around hundreds of people per week to a usually empty house and being told to stay away from crowds and indoor spaces with poor circulation. Maybe I should grow a Duck Dynasty beard and become a hermit. It’s 4:30 PM and I’m typing, eating some tater tots and sitting still in my PJ’s. No real reason to get dressed today. I have a lot of those days now.

There are signs of hope. I’m able to work some again and have been taking portraits. But, it tuckers me out worse than I think it should. And I now do the grocery shopping, some of the cooking, laundry and cleaning. I’m thankful that I can contribute but my life is much different than it has ever been and I’m struggling with that.

I feel like I’m an ungrateful twit for feeling like I do but who can change their feelings with, “It’s stupid for you to feel that way” or “you shouldn’t feel that way?” Feelings are feelings, ya know?

And then there’s the veiled judgement I feel when people say, “Where are you going to church?” and I answer with “I don’t go to church.” I don’t know if I should give them the imunosuppressed rationale and explain that I am supposed to avoid crowds and closed in spaces. Am I a nutcase germophobe? Honestly, I’m kinda enjoying being free from the conflicts, squabbles and politics but I’m drying up without the community and friendships.

Robin and I have talked about hosting a home group – share a meal, share life, look for navigational clues together in the bible, laugh… But what do I do with that? Got a cold? Stay away. Sick kid? Beat it, get outta my house! I honestly don’t know.

Finding my place after transplant is much more of a challenge than I expected. I don’t know what I would do without my connection to my online communities. At least Facebook and my online support groups make me feel less isolated.

The other thing is that I find myself getting tired of the daily aches and pains and, now after half a year, I’m thinking I shouldn’t have painful reminders of what I’ve been through every single day. Should I? Does it ever stop. Will I ever feel totally normal again. Lately my right side has been causing some discomfort just like it did before my transplant. That has me just plain scared. Thursday I have my six month check at Lahey and will ask a bunch of questions.

Every day is a gift. I know that better than most. I’m thankful to be alive. Still, in the back of my mind, there’s a survivability statistic. 51% of liver transplanted people are still alive 10 years after transplant. Um, that’s a tiny bit better than a coin toss.

If you’re a praying person, could you send one up for me? For us? Robin still hasn’t found a permanent job. Our health insurance is set to end Jan 1 and my life-long meds are about $2500 a month never mind the required check-ups. Our God has always supplied our every need. I know that yet, like every other human being I’ve ever met, there’s that little voice in my mind saying, “What if He doesn’t this time?”

Six months! AMAZING! MIRACULOUS!

My hope is that in the next six months I will rediscover purpose and see my sense of self-worth recover.

 

 

 

 

About Scott Linscott

Living life to the fullest, walking in the dust of my Rabbi, creating art through photography and written word, speaking words of hope and encouragement at conferences, workshops, church and civic gatherings.
This entry was posted in Liver disease. Bookmark the permalink.

11 Responses to Honestly? I’m struggling…

  1. Julie says:

    Scott,
    There is no one perfect answer or response to your posting….it most likely is a combination of many folks giving input, encouragement, and maybe a tiny of correction.

    You are on a journey. And each new place you “visit ” has both good and not-so-good things to it. What I would suggest is two things:
    Perspective
    Write down your purpose here on earth. Then tape it to the inside of a kitchen cabinet….so that when you are feeling lost, the map is easily found and you can be reminded of why, and where you are going.
    Feelings
    Feelings don’t have brains. They are a response, but they are not intellectual.
    They have led many a great person down the wrong path….
    Feelings can lie.
    They can make the unwed mom feel worthless.
    They can make the faithful spouse look twice at another and start to wonder what if I was with that person instead…
    They can make a small child feel responsible for the mistakes their parent is making.
    Follow my point?
    Coming back to the anchor, the reason, the purpose, can put all of the potentially lying “feelings” to rest.
    Martin Luther once said that he could not stop a bird from flying over his head, but he could stop a bird from building a nest in his hair. THAT my friend is taking control of the thoughts/feelings. Which one to cast away like an icky bug, and which one to feed and allow it to grow.
    Do you think Joni Erickson Tada has purpose?
    Bet she went through a lot of soul searching, asking herself the same.
    My point?
    Please don’t define yourself by what you can and cannot do.
    And never ever think that making meals and contributing at home is less than important. It is foundational. So good and so necessary, and so under appreciated.
    (It must be immensely helpful to Robin.)

    Each breath is a second chance.
    If it ever gets to the point where all you can do is breathe on your own, there is still purpose for you here.

    Go write down your purpose.
    Paste is where you can easily read it, even when lost.
    Be the thought police. Judge it by the ANCIENT BOOK. Who knows what we need more than the Author of Life?
    Blessings my friend.

  2. Jake McCabe says:

    “The most beautiful people are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” ……………… The world needs people like you Scott. I can name countless insensitive D*uc@e bags, but people like you, if im lucky, i can count on one hand.
    Jake

  3. FloridaVet says:

    Scott,

    Remember what I said about our new normal? I still yearn for the days that I could do repair work on my house, or go out and do something physical like golf, or softball. It is just not in the cards for me now. I have found the aches and pains that go along with post liver transplant are quite a challenge in themselves. The fatigue that is a daily battle was not something that I expected and sometimes it feels to me like I am less of a man because of it. Everyone’s recovery is different but there are issues that we all experience.

    After my transplant I was also worried about infection from colds and flu but my transplant team instructed me to make sure to get my flu shot, and wash my hands often. I was told by my doctors the liver is the most infection resistant organ that is transplanted. Once I was past the initial recovery period, about three months, I was encouraged to continue with life. I began by going back to church, walking around my local mall, and seeing friends and family that prayed for me.

    I am now part of a worship group for a recovery program at my church. I also lead small and step study groups. I have found more connection to God through my service than I ever thought possible. God has blessed me richly in my spirit and I love Him that much more. I don’t do these things because of what I can get but because of what God has called me to do.

    I feel that I know how much you miss your fellowship in the body of Christ. We as Christians are drawn to each other to learn God’s word and to be blessed by Him as we worship. I find that the aches and pains that my body has seem to pale in comparison to the joy I receive from Christian fellowship and worship.

    Speak with your doctors and see what they have to say. Perhaps they can guide you to a better quality of life. I can certainly feel empathy for you as I have many of the same issues. I figure that God has kept me here for His purpose and I cannot fulfill His purpose if I am stuck in the house. It took some time before I had any understanding what God wanted me to do so I would encourage your patience. I have you in my prayers every day.

    In Christ,

    Tim

  4. McDonald family says:

    Scott, We are blessed to be able to pray for you and your family . We are thankful for what God has done through your life and pray that he surrounds you with a (germ free 🙂 strong support system to fellowship and share life with, and many. many more great days, and also that your financial needs will be fulfilled. Blessings

  5. You are right, your life IS different now. Before your job was to be the one ministering,now you need to have others minister to you: you are alive – not dead; you have more goods days than bad; you are stuck in a JOB you didn’t choose. It is a 24/7 recuperative position with at least a one year contract that has no clause for exit. It is hard and exhausting work with not only a freeze on pay increases but a promise that your expenses will keep increasing no matter how you try to downsize and prepare. You have become the housewife with the now empty nest on top of everything else. Pretty full plate that would give most a belly ache. You are no different than people that have gotten food poison and now avoid that food like the plague(I was there and think you experienced a much higher level of pain). So be protective of your new liver and baby the heck out of it.

  6. Sharon Sparrow says:

    Scott, how my heart hurts for you. I can certainly relate to how your feeling, my husband is feeling it too. He still has pain similar to before his transplant and wonders if he will ever live a real “normal” life. Although grateful, just as you are, for this new lease on life it is the uncertainty that bothers him also. It has been a long road of being sick before transplant and I try to reassure him that the road back won’t be as long. He has made great progress so far but it hasn’t been easy. I have been telling him about you and your journey in hopes that he can see how far you have come and that he will too. Whether you know it or not you are an inspiration to others, you are a true servant Scott. I know for me this entire process has taught me so much about God, humanity, and mostly myself. A trial truly filled with blessings both large and small. As far as keeping yourself healthy this cold and flu season, just stick to the basics, it’s what we do. Good hand washing (that means everyone who comes through your door), letting people who are sick know not to visit and avoiding large groups. You can definitely have people over, you SHOULD have people over. I encourage you to have your small group at your home, share a meal and the word, a few laughs ect. Our family will be keeping yours in our prayers.

  7. Denise St Pierre says:

    Hey Scott, While I’m not the one with the life changing health problem, Roger is……..I have seen how it has changed our life together. I don’t consider what you are sharing as whining, it’s what you are feeling and sharing those feelings helps others to realize they are not the only ones with similar feelings.

    From my standpoint, I can say that God has always provided for us, but being the “human” that I am I still spend time wondering “what if”……..

    As for normal, well that is an ever changing word in our lives, normal today may not be the same normal next week…..sometimes I like the “new” normal and well sometimes not so much!

    I am amazed at what you are doing considering where you were only 6 months ago!

    Denise St Pierre

  8. Mary McGaw says:

    I cannot relate to your exact experience but do know that some of what you describe is part of the grieving process that I have had experience with. It is something no one wants in their life and the “feelings” are not pleasant. You need not give answers for or try to ignore them. Those who truly love you will accept you in whatever stste you are in. I will be praying for you that things will improve,you and Robin will find answers for your situation and the Lord will provide your needs. Mary

  9. Gary says:

    Thanks, Scott…for your honesty. More than that, for your courage. Slinking back to the shadows would be so much easier. You encourage–well, “inform” would be better because I’m not all the encouraged–as I walk slowly down the 4th stage prostate cancer trail. So little evidence in my case. Healthy to all appearances. But “it” will happen soon enough. Your journey in pain and candor does, at mnimum, let me know I am not the only one on such a narrow, rocky, obstacle infested trail.

  10. Deb Grupe says:

    You help your online community to remember what things are truly important…the “one thing needful.” Thank you. Yes, feelings are feelings, and you are allowed to have them! Hope is a feeling, too, and I know you also have that one. Hang on to that one!

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