Tag Archives: hope

Someone I Used to Know

I dive in after my little boy who has fallen into the ocean, frantically calling out to him, “Baby, baby, where are you?” I spot him underwater, slowly sinking, and I swim toward him, extending my hand, “Baby, baby, grab my hand. PLEASE GRAB MY HAND!” He stretches his arm out toward me but doesn’t quite reach me and continues his slow motion descent further and further down. I call out to him again, “Baby, PLEASE GRAB MY HAND”, and he makes one last try, and almost makes it but just as his fingertips barely touch mine, he slips away. As I watch helplessly as he descends deeper and deeper into the ocean depths, a sense of hopelessness and total remorse engulfs me, realizing that I can never save him. Then I wake up.

I am attached to my son. I am he and he is me—we are one and we always were. We are attached surely as if our livers, or lungs, or hearts were in the same body. I feel him and I cannot separate myself. I know for sure that I will not survive if one day I get the phone call that I have been dreading for so many years. I will cease to exist, if not physically, but spiritually—my soul will surely die and time will stop. I wonder why God puts people in the world for suffering while others live a charmed life. I go through each day, trying to become a “Lasagna noodle” and I am sometimes successful. But, alas, that serene state never lasts because I cannot get the vision out of my mind of my child, being shunned by everyone, alone, and looking like the Unabomber, hoody, sunglasses, and surgical mask, trying to navigate the world—running from all the entities chasing and trying to kill him.

Mental illness has taken his soul just as if he were a victim of a Body Snatcher—for he kind of resembles himself, but his essence is gone. He has become “someone I used to know” but don’t anymore. I can fool myself on some days and sometimes when I am at Church I can pretend in my daydream that he is sitting right beside me, worshipping God and feeling the rhythmic beat of the Christian Rock band. I can daydream that he is OK now and that he is back in his right mind. A sense of peace and serenity surrounds me and for a short period of time I can actually believe that anything is possible and I have hope again. But then reality creeps back into my world and I know I am powerless.

Today I have come to the realization that I can never save my boy—only God can. Unlike when he was a baby, he is a grown man and I have no control in his life. Although I had that dream so long ago, I can still remember it because it never felt like an actual dream—more like a premonition. I can pray and hope that one-day the stars and the moon will align and somehow he will be saved. But realistically I do not feel that will ever happen although I still hold out hope; when you lose hope that is the end and I am not ready to accept that yet.

Testimony

This is my Testimony that I wrote a number of months ago. It has actually been 3 years and 4 months since my surgery but I wanted to post this because I had not done so before:

Recently, I started thinking that almost 2 years ago I had a life changing surgery. But the more I thought about it, the more I realized that it was actually almost 3 years. I couldn’t believe that time had just slipped by so quickly. So, on March 1st 2016 it will be 3 years since I was released from a living hell of a crippling illness. Everyone knows HOPE is everything, but sometimes no matter how you look at it, HOPE seems to be nowhere. After having lower back surgery, I inexplicably began to have trouble walking. I had a severely dropped foot, constant nerve pain, and a partially paralyzed leg. HOPE began to slip away after exhausting all tests and follow up MRIs, even 2nd opinions, only to be told, “We just don’t understand what is wrong with you. We have never seen something like this before.” Each morning I would awake with hope that a miracle happened and somehow I was getting better. But as soon as the realization came that nothing had changed and I was even worse, an incredible despair and hopelessness would engulf me. There were so many days that I wanted to just give up but I kept saying, “Maybe things will be better tomorrow. If you are thinking of offing yourself, put it off until tomorrow and see.” By employing that tactic, I managed to stay in this world to see a miracle happen. I have no doubt that this miracle was from my persistence and constantly not taking NO for an answer, a doctor who actually sat down to think about my symptoms, and God. I don’t think I would have gotten better if all of these factors were not aligned. By God’s grace one of my doctors ordered another MRI and found the culprit, a benign spinal tumor compressing a portion of my thoracic spine. Faith is a beautiful thing and when life is going well, it is easy to have it. The true test of faith is when life is life—when you feel that all hope is gone and you cannot see your way out. So many people are waiting for a white light and burning bush to prove the existence of God, when He is there all along. I believe my horrendous experience was necessary to bring me to my knees and start believing. I do not think this was an accident and that there are no coincidences in God’s world. God was working in my life for a long time before I noticed it, even meeting Joyce and Bill, who introduced me to their church. If my son had not had the breakdown, I never would’ve met them. I think God was patiently waiting for me, only I needed the experiences I endured to discover Him. I still pray and pray for my boy, and sometimes, when I am in a bad space, I wonder if God is really listening. Then I remember I must have faith, which equals hope, which equals life. I do not know what the future holds, and I must remember that I am not in charge. It is when I turn things over to Him that I achieve that elusive gift of peace and serenity that I am constantly seeking.

Faith

Recently, I started thinking that almost 2 years ago I had a life changing surgery. But the more I thought about it, the more I realized that it was actually almost 3 years. I couldn’t believe that time had just slipped by so quickly. So, on March 1st 2016 it will be 3 years since I was released from a living hell of a crippling illness. Everyone knows HOPE is everything, but sometimes no matter how you look at it, HOPE seems to be nowhere. After having lower back surgery, I inexplicably began to have trouble walking. I had a severely dropped foot, constant nerve pain, and a partially paralyzed leg. HOPE began to slip away after exhausting all tests and follow up MRIs, even 2nd opinions, only to be told, “We just don’t understand what is wrong with you. We have never seen something like this before.” Each morning I would awake with hope that a miracle happened and somehow I was getting better. But as soon as the realization came that nothing had changed and I was even worse, an incredible despair and hopelessness would engulf me. There were so many days that I wanted to just give up but I kept saying, “Maybe things will be better tomorrow. If you are thinking of offing yourself, put it off until tomorrow and see.” By employing that tactic, I managed to stay in this world to see a miracle happen. I have no doubt that this miracle was from my persistence and constantly not taking NO for an answer, a doctor who actually sat down to think about my symptoms, and God. I don’t think I would have gotten better if all of these factors were not aligned. By God’s grace my doctor ordered another MRI and found the culprit, a benign spinal tumor compressing a portion of my thoracic spine. Faith is a beautiful thing and when life is going well, it is easy to have it. The true test of faith is when life is life—when you feel that all hope is gone and you cannot see your way out. So many people are waiting for a white light and burning bush to prove the existence of God, when He is there all along. I believe my horrendous experience was necessary to bring me to my knees and start believing. I do not think this was an accident and that there are no coincidences in God’s world. God was working in my life for a long time before I noticed it, even meeting Joyce and Bill, who introduced me to their church. If my son had not had the breakdown, I never would’ve met them. I think God was patiently waiting for me, only I needed the experiences I endured to discover Him. I still pray and pray for my boy, and sometimes, when I am in a bad space, I wonder if God is really listening. Then I remember I must have faith, which equals hope, which equals life. I do not know what the future holds, and I must remember that I am not in charge. It is when I turn things over to Him that I achieve that elusive gift of peace and serenity that I am constantly seeking.

Hope

When I was a child in school, I heard a poem that stuck with me throughout the years, called Richard Cory. Somehow I always remembered it for the message. It was about a man named Richard Cory who was a pillar of the community, rich, handsome, refined, a gentleman, dressed impeccably, and seemed to have the world by the tail. Everyone would see him floating through the town, greeting everyone graciously, and envied him for his wealth and happy life. But the end of the poem is what struck me, even as a child for it seems that one fine Summer evening, he went home and put a bullet in his head. Somehow (and me included) people seem to think that just because you have acquired “stuff” you will be happy. Whenever you hear of a celebrity committing suicide who seemed to have it all, you scratch your head and wonder why. But even if you think you know someone, you never really know the inner workings of their mind and the demons they may be grappling with. Sometimes suicide may seem like the only way out of a seemingly hopeless situation. I think more people than would want to admit it have considered (even fleetingly) at some point in time, that the world is no longer a place they wish to inhabit. But my theory is that it takes more courage to keep on living than to take the easy way out and end your existence. Upon interviewing surviving POWs, who spent years in a virtual hell, imprisoned by the enemy, one thing became clear—that hope and a positive attitude got them through. The people who lost hope died. I know for myself, in my darkest days, if I get even one smidgeon of hope, it will carry me through another day. It is that “one day at a time” concept, so popular in all 12 Step Programs, that keeps you looking for the rainbow in the midst of never-ending rain.

Surgery Log 2013 – Acupuncture

Tuesday – January 22, 2013

I had acupuncture yesterday and for some reason, I felt horrendous by the evening. My pain level was super, duper high and I cried. I took Gabapentin about 3 in the morning and woke up woozy, dizzy, and wobbly. It took me forever to get myself out of the house but when I did, I began to feel decent. I don’t know what it was, but maybe it was the acupuncture and it just takes time to see the results. I also sent a letter to my orthopedic doctor for him to possibly sign off on a parking decal for me. It shocks everyone that the NS would not do this for me. So far, no response at all. I also called a pain management doctor that Claudia (adapted aquatics director at the Y) told me about. She wants to hire me as a massage therapist but I told her I just cannot commit to this because of my physical status at this point. Laurie wants me to go back too and I am actually going to do a service this Saturday; hopefully I won’t have any problems at all. But, could I do this on a regular basis, NO. It is amazing how much better you feel when your pain level is not too bad. I say, “Not too bad” because it is never gone, but sometimes it is tolerable. Then I feel almost elated. I also sometimes can walk halfway decently but I am still nervous to go outside without the cane. Maybe I will get better. I have that appointment for a second opinion with Michael’s doctor she used for her back surgery (after someone in Augusta Back screwed up her original surgery). I am not holding any high hopes but I wish that he would at least run possibly a CT scan or something to find out if there is indeed a problem. I don’t know, but I hope that God doesn’t let me down. I want to get out from under this nightmare and live some sort of life again.

Surgery Log – 2013 – The Y and exercise

January 3, 2013

I am now going to the Y and it feels like home again. The first 2 days I did workouts on the Arc Trainer and other machines. It felt good at the time, but afterwards, my symptoms seemed way worse—almost unbearable. I went back the next day and did the same type of exercises, and this time later in the day, it was terrible. I don’t know if there is a correlation between the two. I had the file sent (if they at least sent it yet) to the new surgeon that Michael recommended. I have to investigate all avenues at this point. I have now started aquatics therapy in the new Y pool specifically for the handicapped. Who would’ve thought that this would happen to me; just like who would think that they would become a quadriplegic—you just never know what life will present to you. I am totally exhausted now and actually having a hard time walking again. I hope this is just because of the strenuous nature of the pool therapy. I really enjoyed it and want to continue tomorrow.

January 4, 2013

It seems that no matter what physical exertion I do—either “strenuous” or just cleaning, I feel worse nerve pain. I don’t know which is worse, the intense pressure on my abdomen and back or the burning and not being able to walk in my legs. If I could just get up in the morning and feel that there was at least SOME miniscule improvement from the day before I would have hope. But, it is exactly the same as the day before, no matter how much or how little I do. I can’t just stay in bed or on the couch all day because they want me to exercise (probably just a little) but it is 2 months since surgery and this is ridiculous. If I just sit around all day I will gain tons of weight and be super depressed. I don’t know what the answer is at this point. I was hoping since I took the Gapapentin last night I would feel less terrible. I say LESS terrible because I never, ever, feel really good anymore. “Less terrible” is my new reality; I can’t even hope at this point for “feeling great” or “feeling decent” or walking normally. I would settle for just having at least less pressure on my belly which is unbearable sometimes. I don’t know if anyone who hasn’t experienced this knows what it is like to feel like you have a lead corset pressing in on your belly every day. The pressure is so intense that I cry sometimes. It is so hard to live at this point. I am going to the pool today, but yesterday it seemed like I felt worse afterwards and at this point I am at my wit’s end; I just don’t have any answers anymore. My current doctors seem to have just given up on me. I guess when the surgical result is not what they want they just throw in the towel. In this modern day of miracles, I cannot believe that there are no answers. There has got to be something else wrong with me that they are missing, and I just KNOW this! I just need help from above. I pray each day for a miracle or at least a little bit of progress—maybe today is that day! HOPE, that is what I need, HOPE—hope is everything, after all!

Surgery Log 2012 – Numbness, Burning

12/14/12 – Friday – I wake up the same as usual, no change. I am still having the numbness, tingling and burning, which is so depressing. I am trying to maintain some sanity today so I put my back brace on and it feels a little better. It somehow alleviates the pressure on my belly when I wear that. In the meantime, I will have the MRI today.

12/15/12 – Saturday – I had the MRI with contrast yesterday and that was uneventful. I then went to Walmart and the numbness, burning, and tingling in my legs was almost unbearable. I learned from the Internet that this is actually a form of pain, but not in the traditional sense; it is NERVE pain. It is almost if not more unbearable than regular pain, as most people know it. I keep saying, “Well at least I’m not in pain. I just have the numbness.” But this is not the usual numbness that I originally had, it is a deep, searing, burning, numbness and is a type of pain. Yesterday I finally identified this as a “burning” sensation. It is horrible. In reading over my entries I see that I have had days where I was not feeling bad at all since the surgery. I don’t understand why I felt better in the beginning, right after the surgery, than I do now. Also, every so often I feel a lot better and my leg is stronger. I don’t understand why the numbness seems less and then the next day or even later on in the day, I am back to the same burning, tingling, numbness as usual. Maybe it is a good sign that it occasionally abates, but I am at a loss. Last night I was absolutely convinced that the doctor screwed up and injured my spinal nerve which is why I am not progressing much or even at all. But I am resolving today to just accept this day as it is because I have no control of anything at all at this point until Monday when the doctor can review my MRI. I spoke with Jane last night who said that the MRI with contrast will absolutely show everything that is going on. If there is a problem, it will show. I don’t want to have to go back into surgery but if there is something wrong and it is pressing on the nerve, I will do whatever it takes to get better. I’m going to try to be free from self-pity today. We’ll see how that goes. It is amazing how a small bit of improvement can cause such elation so maybe if I can look for something that has gotten better I will have a better day. I will keep praying.

Later in the day: I decided to not take the ibuprofen because it doesn’t seem to work on nerve pain. It works great on regular pain, but it definitely does not stop the numbness and tingling. All of a sudden, the symptoms seemed less. Maybe it has something to do with me going to Starbucks (I’m going broke) and just “relaxing” as much as I am capable, but I felt a lot better both physically and mentally. I then took a dose of the Gabapentin which is for nerve pain. I don’t know but maybe I feel a tad bit less terrible. I will take another one tonight before bed and who knows, maybe, just maybe, I will see some progress.

Surgery Log 2012 – Pain and numbness

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.

Surgery Log 2012 – Better State of Mind

Better State of Mind – 12/12/12 – Wednesday – This is a date that, according to reports, will not come around again for about another 100 years. For some unexplained reason I wake up in a better state of mind. I’m not sure why because there is never any specific explanation, but it seems I am less numb. Again, this may be my imagination, but I will take it. Since I feel decent, I do my exercises and walking outside today, in the morning before taking a shower. I am very productive in the morning. But it seems that when I do a lot of exercises, I end up even more numb. I am trying to just ignore this so I get ready for a meeting. Afterwards I do some paper work for the spa at home, file bills, pay a huge bill in full, order a Christmas present on line for my son and family, etc. The bill was for almost $800 and was a smack in the face to open my mailbox and see that. But after speaking to the billing department I realized I had to bite the bullet and pay it. But even though I feel physically lousy as I usually do later in the day, I persevere and try to keep my spirits up. I was prescribed Gabapentin, a drug for nerve pain, a while ago, but never took it due to reading about bad side effects. But I then saw on the Internet that many people take it with good results. The nurse said I should try it so I did, before going to bed.

Surgery Log 2012 – Disability

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.