Ambiguous Loss: I totally understand that concept. I have an adult son who has been battling mental illness for almost 20 years. He has been hospitalized numerous times, seems to recover and lead a productive, relatively “normal” life for a while, only to “relapse”, which actually implies he was ever free of his mental illness, which he has never really been. He is schizophrenic and is now on medication, but does not comply with the things he needs to do to function in the world. It is especially difficult because he lives in NJ and I live in Georgia. However, I have tried to get him into program after program, with therapists, and case managers only to have him reject the help that is freely offered him. He has been homeless for years, yet keeps turning down offers of housing from his treatment programs. I actually wrote about ambiguous loss in my blog, A Woman Speaks Out, back in 2014. When a loved one physically dies, there is a period of mourning that eventually gives way to some sort of acceptance and healing. But when your child becomes, “someone you used to know”, it is particularly difficult because how can you mourn somebody that has not died? It is easy and anybody who deals with a loved one with dementia or especially mental illness can understand this concept. I mourn the adorable boy he was, the young man with promise, the son who was always on the same wavelength with me, the boy with the great sense of humor. I am always waiting for “the other shoe to drop” and wonder when the next crisis will be. I grieve my boy, who I speak to periodically and actually sounds fairly “normal” on the phone. But, there simply is no reasoning with him about anything he does not want to do. It is a constant battle for me to disassociate myself on some days, just so I can have some sort of happiness. I am in mourning every single day and sometimes I wonder how things would be if he passed away. God forbid, but I could grieve and then begin to heal. But then I hate myself for even thinking the unthinkable. When there is ambiguous loss, you grieve the loss of the essence of your loved one; you mourn every single day, some days less then others. You live in a roller coaster world where one day you may get some good news from his therapists and then suddenly there is no movement or he goes backward. One step forward, two steps back and then you often have to start from scratch. This happens over and over with no relief in sight. You cannot talk to most people about your “loss” because they do not understand. You cannot constantly bombard people with the latest horror story because they do not want to hear it. You have to put on a happy face, when underneath there is about 20% of my brain that cannot ever, ever, be happy. There is that part of me with a broken heart that I have to hide lest I be considered a “negative” person. And then there is the loss of hope—the feeling that nothing will ever get better. That hopelessness is deadly because it leads to depression on my part. I know that acceptance is the key to everything, but this is often a bitter pill to swallow and it is hard to accept that your child is gradually disappearing before your very eyes.
The world of “If Only” is a fantasy world I sometimes live in. It is a very dangerous place and nothing good can come from visiting, especially if I stay too long. If Only is a close cousin to Regret so I try very hard not to say those two toxic words. Yet I still find myself thinking, “If only I had done…..” or “If only I didn’t do such and such, or “If only I were rich”…..—you can fill in the blanks and any way you look at it, you end up with remorse over some missed opportunity, or a regret over something you did that you are sorry for. It’s too bad that we can’t just turn the clock back or hit the undo button on a decision we’ve made. We are all human and sometimes we don’t always think things through when we decide to embark on a journey. A case of the “If Onlys” can also lead to envy and jealousy especially when you cannot afford some material item that your wealthy friend can. Then you say, “If only I had married better” or “If only I had not been so stupid to divorce my husband so quickly”. The thing is that whatever is done or was not done, you have to live with the consequences or live with the reality of a situation you cannot control. Acceptance and the Serenity Prayer go a long way when I am living in that fantasyland of “If Only.” My options are to “accept the things I cannot change” and “have the courage to change the things I can” and to “have the wisdom to know the difference.” Since we know we just cannot press the delete button on bad choices, the sooner we realize we cannot change them, we can move forward and create a better life based in the reality of now. “If only” keeps you mired in the past or keeps you in a perpetual state of jealousy, depression, regret, and remorse. Either way, you are stuck and personal growth ceases.
As time goes by I am forgetting to be grateful. I have been in a state of flux and depression lately because I am putting too much emphasis on getting accolades. I wrote Being Your Own Cheerleader, but I have been having a hard time following my own advice. I think every human being needs some sort of recognition for what they do, even for seemingly small things. It is amazing how one kind or positive remark from someone can do wonders to carry me for a few days. But it just seems that when I write and write, and have no comments, I begin to doubt myself and all those negative tapes start playing in my head, that I am not good enough, and what’s the point, etc. Then my friend Jane, who has been in and out of the hospital since November, with complications of MS, calls and the amount of gratitude I feel comes flooding back. That is when I remember that back in March 2013, I was literally given another chance at life. Immediately after that surgery I was actually happy, because I didn’t take for granted simple things such as walking across the room without a cane. Now, over thirteen months later, I sometimes forget how horrific my life was and how amazing my life is now. I could compare myself to other people who have more money, a relationship, more friends, and feel insecure and small. But, when I compare myself to my friend who struggles with simple tasks such as just walking, cleaning, loss of autonomy, having to depend on people to drive her to appointments, I am filled with gratitude. When I think along those lines, and don’t let myself drift back into negativity, my day and life goes better.
Wednesday – December, 26th
I’m happy Christmas is all over! I woke up with a case of very bad depression. I tried to shake it but it stuck with me all day, even though I went to Starbucks with my laptop and did various chores, I still felt like “everything was wrong” and I just cried on and off, even in the car. My knee started to give way at Walmart (my second home) but luckily the shopping cart (buggy down here) prevented me from going down. Still, it unnerved me and added to my morose mood. I was too depressed to actually make anything for supper so I settled for popcorn and leftover turkey. Also there is so much uncertainty associated with the Aflac disability which I still have not received for December. That lack of money coming in makes me frightened and depressed too. The Aflac agent never bothered to return my call—lovely! I kept calling myself fat and worthless and crippled. My state of mind prevented me from getting to a meeting but on a good note, when I came home, David called and wanted to Skype so I could see Henry. I also received the album that Joanne put together for Christmas; Henry’s first year. I even saw Joseph at David’s who is miraculously staying there for a few days. I ended up feeling a little better and know that God will take care of things if I just get out of the way. So, I will get to bed early and read. When I spoke with Joanne, she suggested that just like other illnesses, I will one day wake up and suddenly feel way better. That would be the best present ever in my entire life. I said maybe that will happen and maybe I should believe it. Maybe I am too negative and who knows what the future holds. It is all a mystery to me but I do know that at this point tonight, I have no more control of anything except what time I will clean the bird cages or go to bed. Good night!
12/24/12 – Monday – Christmas Eve – I woke up with the usual stiff and sore body. I decided I would go to the gym and to a meeting. I also did not feel like doing my usual chores in the house today so I went to Starbucks and just sat down with a Pumpkin Spice Latte. I came home and redesigned some of the earrings that Lisa gave me for my “birthday.” Janet’s family usually celebrates Christmas on the 25th but this year things were very different. Due to all her children having plans on Christmas day, they all decided to come over on Christmas Eve. That was fine but it left Christmas day empty, but this was not my call so I had to accept it. In the meantime, my legs for some reason were especially wobbly and my balance was way off. This was very upsetting and I almost fell while everybody was there. That just made me sick. I totally do not understand why some days my legs don’t feel that bad and even feel strong, and other days, I am so weak. When I came home I watched the tail end of It’s A Wonderful Life.
12/25/12 – Tuesday – Christmas Day – My walking was not too bad but a little wobbly again. I even walked outside with my cane for about 20 minutes or so. Then I got ready and went to a meeting. I was ranting a little before the meeting due to my wobbly legs but for some reason, after the meeting I felt a lot better. I wanted to go to Starbucks with my laptop but when I found one open, it was so packed to the gills that I just left, without even getting anything; very disappointing. I came home and put my leg brace on which helps me walk better—sort of (in a peg leg kind of way). Then more cleaning, something I seem to be obsessed with since I got crippled. Janet thinks this is because I at least have some control of this part of my life, and that seems like a good explanation. I am starting to feel depressed and hopeless even as I write this at 7:00 pm, so I will try to go to bed early tonight. I still think about ending everything each day but if I put it off long enough, I usually find something I can hang on to; some hope to keep me going for yet another day.
Pressure, Numbness – 12/19/12 – This morning I woke up feeling less stiff and off-balance, but with the same intense pressure on my belly. I am beginning to think that maybe I should just accept that this might be a permanent condition. Basically there is no answer as to when or if the numbness, burning and weakness will improve, so it is just a waiting game. I find that when I just ignore it—or about as much as I can—I feel better and can stop focusing on everything bad. Actually there are some improvements, most notably, I can bend over and turn sideways because the actual incision and the back itself are much better. But, internally—the nerve root—is the last thing to heal and it can take up to a year or more. My guess is that the EMG will basically show nothing. The PT made a very important point; if it were peripheral neuropathy, it would most probably be bilateral, but my weak leg is unilateral. I think the test will just prove that the whole problem is still the spinal nerve and it just has to heal on its own. I remember when I had a root canal about a year ago and for a long time I kept complaining that I still had pain, to the point where the dentist went back in to check. He said nothing appeared to be wrong with the tooth and sent me on my way. Boy, I was so aggravated that I thought for sure that he screwed up the procedure. So, since there was apparently nothing else that could be done and they could not find a reason why my tooth still hurt, I had to just live with it. Well, a few months ago when I was brushing my teeth, I suddenly realized that my tooth did not hurt anymore; the pain was gone. It had steadily been getting better, over time and so slowly that I didn’t even notice it. Then one day, it became apparent that it felt normal. I’m starting to think that this is what will happen with this; over time the symptoms will diminish to the point that it will be gone. The question is, can I wait until that happens. I am thinking of filing for disability because my doctor’s nurse seems to think that I will be able to return to work soon. I just don’t think that is reasonable with such a physical job as I have. I will literally fall out in the massage room because of this weak leg. This is not to mention that I can only stand for so long without the fatigue and burning setting in on my legs. She is being a bit of a hard ass about filling out the required forms. I’m still searching for a “reason” for this happening and I just don’t know for sure. As of now I am thinking of calling my primary care physician to put me on some antidepressants, just to get me over the hump. I went to a meeting today and I foolishly thought that I could walk without my cane so I held it up when I came into the room. That was not a good idea because I almost fell into my chair, totally losing my balance. Then for the first half of the meeting, I was on the pity-pot. By the end I felt a little better. It is true that for some reason, I am “walking” better today, but not well enough to do it without a cane for protection against losing my balance. But on a bad note, the burning sensation in both thighs is intense again and I dont not know why. The problem is that these brief periods of progress always seem to be followed with a regression the next day. Each day is a new beginning, as if the progress from the following day never even happened and is so discouraging. As of right now, at 4 pm, the burning in my thighs is very intense and uncomfortable. But if it comes down to being able to walk better and having burning nerve pain, I’ll take the walking better part.
12/16/12 – Sunday – I woke up this morning feeling just as bad as usual, as if yesterday’s “progress” never even took place. Every morning is like a new beginning, and back to square one. Each night I go to bed and pray that I will have at least some indication that I am getting better, but that is never the case. Today, I am super unsteady on my feet. My renter left the house and forgot to deactivate the alarm system this morning. I was sitting in my office and suddenly realized that the alarm was about to go off so I had to literally “jump up”, without my cane, and “run” over to the closet to press the deactivate button. I almost fell and was so off balance but I did it. However, it depressed me to no end because a simple movement like that almost resulted in me falling. I do not know why I am so unsteady today and it is very discouraging. My knee is painful and does not support me properly, probably due to the weak leg. Last night my right leg and especially my foot were freezing cold to the touch. No matter how many socks I put on, my foot is just plain COLD. I had a measure of peace yesterday when I went over to Serenity and picked up some paperwork, then on to Starbucks. That seems to be the only place that I somehow can relax and feel like it all will work out. I am desperately trying to maintain some measure of peace today, because that seems to help, but it is hard when you are walking all crooked and wobbly. I am seeing the neurosurgeon tomorrow who will review the MRI with contrast. I am not sure if I want something terribly wrong to show or not. If there is something amiss, then maybe they can fix it. But if nothing shows up, then what the hell am I going to do at this point? I am so tired of being consumed with my physical condition and I am beginning to isolate. I’ve missed two Christmas parties recently because I just didn’t want to be walking with a plate of food and my stupid cane, not being sure if I would fall and make a complete fool out of myself. I am starting to avoid social situations and staying home more. My world has become increasingly more and more narrow. I am so sad, words cannot describe it. I pray to God that there is some hope tomorrow because I am coming to the end of my rope.
12/13/12 – Thursday – I seem to feel OK this morning as far as side effects, but of course the pain and numbness it still present. I don’t know what I was expecting—-maybe a miraculous recovery, but I feel really sore this morning. I will take the other pills today and see what develops. Later in the morning my resolve breaks and I just feel like enough is enough regarding the intense pressure and numbness in the abdomen and back. I start out by saying that this is ridiculous, and it builds up to a full-blown meltdown, complete with ranting, raving, vows of suicide and calling the doctor’s office yet again. Of course they have to take a message because there is no way to actually get someone on the phone immediately. The nurse finally calls and says she spoke with the surgeon who said I need to get another MRI (hopefully the insurance company will pay for this) before my Monday follow-up visit to see if there is anything wrong. At least she is on the same page as I am because that is what I was going to suggest. No MRIs are done in their facility on Fridays so I have to get it done somewhere else. In the meantime, I have to get blood work done downtown at University Hospital, which makes me nervous to drive there. But, I finally make it after getting a little lost and I am proud of myself for keeping calm. The MRI is scheduled for tomorrow on N. Belair Road, which is easy to find, right in Evans. I’m not sure if I want it to show something drastically wrong (sponge left in, or bone out of place, or more narrowing) to explain why I have made basically no progress. If everything is as it should be then it is even more discouraging because there is no explanation as to why I still feel these horrible symptoms. On the other hand, if there is something drastically out of the norm, then it would at least give me hope that this can be corrected. There it is again, that word HOPE. If they keep telling me that I just have to be patient, then I will lose all hope. I need HOPE at this point to continue on. I simply cannot or will not continue to live my life as half a person. An old friend once told me that his wife had back surgery years ago and she just would not get better. They did an MRI and discovered to their horror that a sponge had been left in. She then collected a huge sum of money in a settlement. That has stuck with me and who knows? I am not looking to collect money (although that would not be so bad)—-I am just looking to feel better. Nobody knows how terrible it is to wake up every morning and have pressure and numbness in your belly, back, and legs with no end in sight. Nobody knows how devastating and frustrating it is when there are no answers in sight and your whole world is rapidly going down the toilet. I pray to God for help but God helps in his time, not mine. Please Lord please get on the same page as me. Thanks.
Disability – 12/9/12 – Sunday – Basically I am feeling the same as yesterday, physically. I actually thought that my toes on my right numb foot curled better, but maybe that was my imagination or wishful thinking. It gave me a little hope. You know if I just had even small improvements each week that would give me something to hold onto. But as I usually do, I do too much I guess. I cleaned my bathroom (which took forever because I have to move so slowly), did my exercise, went to the gym with more exercises, and went to Walmart. By then my right leg was feeling so exhausted that I could barely walk. This is what always happens; I feel a little better so I overdo it and pay the consequences later in the day. This is what caused me to have my meltdown the other day—having to do chores by myself and paying for it. I started to get on the pity-pot again because I am really scared that I will have to go on permanent disability and believe it or not, I don’t want to. I just don’t think that I can continue to feel so physically sore and unbalanced each day and go on with this. I can now empathize with Aunt Gladys who had severe pain each and every day, but lived with it. She had numerous unsuccessful spinal surgeries, yet she always maintained hope that helped her go on. She was such a trooper and I always admired her, but now even more for her courage. A number of months ago I was in a funk regarding my job because I was burnt out. I kept saying out loud that I didn’t want to keep doing this job. I kept trying to think of a way that I could go on disability—maybe mental, maybe back, who knows! But the mental disability would stigmatize me and my physical problems were not that bad. But, be careful what you wish for, it just might come true. Remember when I wanted to leave my job in Manhattan and somehow, in a horrible twist of fate, I got laid off a year after the 9/11 attacks. Now, in another ironic twist, I am facing disability. I kept saying, “OK God, this is not how I wanted it to be.” But then I thought that I never really specified how I wanted this achieved so, God has in some ways given me a way out, but not how I wanted it. Disability (if you’re not faking it) means just that YOU ARE DISABLED and unable to work. It does not mean that you get paid for staying home and then can go gallivanting around town, feeling great. No, I am paying for this and I wish to God I never had this. I thought I’d be one of those 60 year olds in great physical shape, exercising and running forever. I never, in a million years fathomed that this would be my life. I am trying to maintain hope that this will get better, but I am finding it hard to accept that maybe it won’t. There is not one day when hope lasts. It ebbs and flows and I never know when a feeling of hopelessness will overtake me or when I can see some light at the end of all this. It is a roller coaster world each day. I must continue to pray for some type of miracle.
Hope and Prayer – 12/8/12 – Saturday – A strange day. As usual, I wake up feeling sore and stiff and barely able to walk. I try to put it out of my mind but it is hard. I do my PT exercises and walk outside. Then I go to a meeting, which makes me feel better. Ruth and I go out for coffee (although it is way too expensive) but I do it anyway. That was enjoyable. But, I can never predict how I will feel at any time of the day. Even if I am in a decent and accepting state of mind earlier, that can deteriorate in a matter of minutes if I let my mind go there. Cindy, the renter, went to a Christmas party and looked very nice before she left. I took a picture of her and she said if I were feeling better she’d ask me to go too. I just thought of the picture of me in a skirt with heels on. I would not even be able to walk and even if I could, my legs are so thin they look sick. Then I started to look up nerve regeneration and got more and more discouraged to the point that I am feeling upset again. I am falling into that trap I fall into each day at one time or another and that is hopelessness. All I need is hope and I have it each day usually, but it never lasts. I will get the birds ready for bed and go too. The only problem is that in the middle of the night I usually feel really sore (especially my right knee) so that doesn’t even give me relief. I’ll try more prayer.