I wrote the following on my Facebook page tonight realizing it has been quite a while since I wrote anything of substance here. So I am sharing this with you all as well.
Just as a Cliff Notes version of my current state of health...it's not good. I now have Stage 4 Chronic Kidney Disease (CKD). My recent eGFR was 24, with a huge spiked proteinuria, creatinine, and BUN numbers. My red and white counts are down significantly. My edema and anemia are worsening. Basically I reaching the point where the "dialysis" talk has been had. Not just yet to have the access surgery but enough that nephrology will be just as frequent of a hospital department visit as the labs and my endocrinologist.
But even just as important is what I recently experienced and what I want to share. It's difficult but here goes.
"I wanted to share something with you. It is deeply personal and yes, I know, it can be risky to reveal something like this through social media. But it has happened to me and I need to release it. I need you to understand some things I have been facing lately. Or I should say trying to face. I would rather be candid than struggling in silence because being silent about it is probably just as difficult if not worse. I would hope and ask you not to read this judgmentally. Just to be open and understanding. It may not make sense on a first read. Or even a second read. But for me this is the beginning of something of an exercise in both catharsis and therapy.
Nearly three weeks ago I went into a deep and troubling psychological state of thought. It bordered nothing short of not wanting to wake up anymore after everything physically and emotionally I have been through in the past few years and in particular the last few months. As you are aware my physical health has declined especially in the last two years. Nearly twenty-five years of living with diabetes has now been complicated by failing kidneys. Financial strains have been mounting. Daily living has been becoming sometimes harder because fatigue, lack of sleep, and chronic pain are becoming more prevalent. Add on top of it the holidays, the recent loss of a not so close relative, moving back to Massachusetts and then back here to California, personal feelings of loss and failure to others, you name it and I felt it.
I very likely didn’t exhibit it outwardly. At least I don’t think many of you saw it. I hid it well. Too well. For forty-seven years I have not had what we will call a “normal” life. I grew up too young. Losing a parent at age 11 was the first time the word “therapy” came into my lexicon. To be told “you are the man of the house” at that age was, in hindsight, harsh. To live with a disabled parent who I loved very much but saw over time struggle with illness, depression and ultimately her demise all while I was trying to live a life was difficult. To live in a family dynamic; this is hard to even explain, both the good and the bad of it, was difficult. To try to succeed in several jobs only to struggle with outside issues affecting everything in my life was difficult. To try to succeed in relationships only to see constant failures come forth for various reasons was difficult. In short, it had all become simply too much.
I think I have been asked so many times in recent weeks if I had or have a plan to do anything. Surprisingly, I don’t. I just did not want to wake up. Just let me sleep. Let me drift off and the pain I have been feeling will cease. But I also know that what I am feeling, what I felt three weeks ago, was not healthy. It was scary, deep, and not the “blues.” I have a mental illness.
Yes, a mental illness. I am like hundreds of others who for many years have suffered in silence. Many who still suffer in silence. I recognized the fact though that I needed some serious help. And I have been told by many it was a good thing. And yes I am in counseling now to try to work on some very profound issues. Isolation. Pain. Dealing with my chronic health problems. Many, many issues I have been struggling with for a long time and have not sought out help for. Mostly out of fear and shame of what you – my family and friends – might think of me. I don’t want you to think of me differently because of this.
Very often you have all seen me to be the on there for all of you when we have reached wonderful milestones in our lives and when tragedies have come to us. You know I would give anyone anything and not care what it would do to me. I still am that way. For many of you this is the Anthony, the Tony, you know. You haven’t seen the side of me that has faced all of the problems of recent years. My health, my life, being homeless, having related stresses which I have hidden very intentionally because I have often thought I would burden others with these issues. I realize now that I am not burdening but releasing. Releasing the pain and being open, maybe raw, about the person you have known for years.
Now therapy will not be an end all cure. Nor will it be short term. Neither will be my health over time. I have accepted that. There will continue to be good days and bad days. There will continue to be life’s ups and downs. It does not end simply by saying I have a mental illness. I live with this every day. But I live.
I rely now on faith, something that was lacking for some time. I rely now on trying to be open. Not easy as I still have some very tall walls that will seem impenetrable. I rely now on acceptance now that I have very chronic and debilitating illnesses. Tests, visits, medication changes, preparing for dialysis, all of these will continue. And I will continue to rely on you all. I can never thank all of you enough. For those who have donated and continue to donate to the special fund created to help, it has gone to help ease the burdens of ensuring I can meet the daily needs of living. For those who have written me words of encouragement, offered their prayers, lit candles of hope in church, your prayers will be rewarded in some way. Even for those who have not been able to do anything tangible, but in your hearts and minds you have thought about me, in some way I feel that present within me.
I do not kid myself that this round of therapy will be the last I go through. I am certain this will now be just as daily of a routine as checking my blood sugars and watching my diet. But I want, as full disclosure, to tell you I have this “disease.” I am doing everything I can to cope and live with it. As I said you may not understand it right now, but know I am facing this. I will still continue to be me. That will never change. But just know I am going to face this challenge as I do my other conditions as strong as I can and will rely on all of you for your prayers and guidance.
Many have told me the Serenity prayer is a good starting point. And for me now it is my daily wish.
“O God, grant me the serenity to accept the things I cannot change the courage to change the things I can and the wisdom to know the difference. Living one day at a time, enjoying one moment at a time. Accepting hardships as the pathway to peace. Taking, as he did, the sinful world as it is, not as I would have it. Trusting that he will make all things right if I surrender to His will; that I may be reasonably happy in this life, and supremely happy with Him forever. Amen.”
Tony