Help your friend fight…

Many people with disabilities struggle to get out of bed in the morning each day as I do.  However, this blog is not about the daily physical skirmishes, but instead a discussion of emotional conflicts.  These battles brew beneath the surface many times, carefully hidden from even the best of friends.  If you are willing to watch for a few signals, you might see the silent yet frantic cries for help and save a life or at least help soothe some internal pain.  The indicators could be subtle, but the dire desperation is begging for comfort from a friend.

Three hundred and fifty million people of all ages are impacted by depression.  If you read that line again, you will notice it does not say MS patients or even disabled people.  Anyone can experience depression, feelings of loss, isolation, and despair, making them question everything.  Sometimes this internal inquisition can include the value of their very own lives.  They often hide these feelings behind a painted-on smile that any movie hair and makeup team can only dream of creating. Look for these tell-tale signs to be the friend they need with the care they desire.

Your friend or loved one may have a loss of interest in previously pleasurable things.  Sometimes this loss of enjoyment may not be all activities but merely eliminating things that take the most effort. They may withdraw from friends and family as exemplified by only playing video games, sitting in front of the TV, or surfing the Web for hours and avoiding spending time with you.  Engaging with another person and meet that person’s needs require more effort than surfing the Web and may be an early sign of depression.

Sleep difficulties can easily plague your friend or loved one in several ways.  They may have significant struggles falling asleep or even staying asleep, possibly causing them to experience foggy brain throughout the day and an inability to focus.  Be aware of your friend always looks tired, talk to them, and be that listening person they may need.  It might seem like a simple sleepless night, but it could be that silent cry for help, so be that friend and a listening ear they need.  On the other hand, they may sleep extensively, finding it difficult to get out of bed and engage in normal routine activities.

Eating changes may occur, causing corresponding weight changes in the expected direction.  Eating either too much or too little, along with weight changes, can easily be misinterpreted as merely letting oneself go.  Yet this also could be a signal that your friend or loved one might have melancholy thoughts stirring deep inside.  This red flag could be the perfect opportunity for you to check-in and sincerely ask how they are doing.  Discuss their situation using open-ended questions to help them open up to you about what may be causing them distress.                                                                              

Anger and irritability can quickly come to the surface, making life a bit uncomfortable for anyone close. A depressed person battles to make it through the day, and everyday obstacles can make life downright infuriating. This action is another tell-tale sign of depression that is easy to take personally.  If this is how your friend is behaving, and it is not their typical behavior, you should take the time to help them tell their story.

Expressing negative thoughts can be another example of depression.  You may feel excited about something, yet your friend or loved one might give a downer response.  They could say something like, “What does it matter? It makes no difference” or “I don’t think that will amount to anything.”  Negative thoughts like these are a symbolic symptom of depression, and sometimes they feel almost required to throw a dampener on things.  The depressed person is not trying to make life difficult for others, even though that is often the impact of depressive thoughts and comments.  Negative thoughts and behavior can be a symptom of giving up, not thinking anything is important.

Suicidal ideas may take a passive form, such as, “I don’t care if I live or die” attitude or a more active way, such as “Sometimes I feel like driving the car off the road.”  Always take such statements very seriously.  The common myth says if a person is truly suicidal, they don’t tell others about it; they do it.  By this faulty logic, if the person is telling you about it, you might wrongly conclude that they won’t actually do it.  Nothing could be further from the truth. Not only are such statements key elements of depression, but they suggest that treatment is urgent.  Those contemplating suicide may want to give you a treasured personal belonging of theirs.  They believe they won’t need it after they end it. 

Now that you have found out how to tell if someone is depressed, here are some things you can do. Once you suspect depression, encourage your friend or loved one to seek consultation and treatment with a qualified person. This decision is not only for his or her sake but for yours as well. Sometimes it can also be helpful and comforting for you to offer to accompany the person to the consultation.

A friend in need is a friend indeed.

My new beginning…

pic 1 demonsIf you read my MS story, you know about the dark place where I was drowning as I fought my demons. This memory is terrifying; I was only a sneeze away from never eating another piece of carrot cake again. Many people deal with depression, feelings of loss, isolation, and despair that fiercely haunt them daily. I have made a concerted effort to ensure I will never return to that land of darkness filled with the vile whispering monsters. Here is what has helped me stand tall against the constant vitriol.

I have a strong support system that is larger than usual due to technology. I no longer am limited to those who come to my house and individuals who do not understand my multiple sclerosis. My circle of friends is now worldwide as computers and the internet has shrunk our globe massively. I have friends who are literally and even figuratively right next door even though they may be in a different state or country. This pandemic in which we are immersed has literally limited life, but these internet MS friends are available around the clock.

pic 2 tai chiExercise is essential for MS life, and before this virus forced us into lock-down, I was a regular swimmer.  I used a local community rec center pool and swam for two to three hours, three times a week.  Every time I got out of the pool, the water level dropped by a gallon as I think my skin soaked it up. I felt good after my workouts and could feel my endurance getting better, and when I had to miss my swims, recovery took longer. I now exercise at home using seated Tai Chi videos, fitness bands, or whatever I can do to keep my body moving. While I do these forms of fitness, I eagerly wait for the world to return to normalcy and reopen the pool.

Multiple sclerosis is known for negatively impacting your brain, causing a mental slow down. As MSers like to call, cog fog can come and go or affect us long term and challenge us daily. To combat this issue, I read books and play games to stimulate mental growth and counteract MS mental degradation. My research shows beneficial games can be more complicated, like chess or less complicated like Tetris, and still be helpful. Since I write a blog, I play mostly word games, although now and then, I play Tetris to help lubricate my brain muscles.

The advent of delivery apps has helped expand my existence in this confinement caused by quarantine.  I always had to eat very little because I had very little, causing me to become very little in size.  Even if I had the money, the delivery options from restaurants and grocery stores were nearly nonexistent, making me fall deeper into the void of life.  I now can have groceries delivered from various stores at my convenience, helping me keep my independence.  These apps also make my mealtime less limiting by offering a wide selection of restaurants from around town, making me feel normal.

Before COVID-19 threw us into this seclusion dilution, I was active in my church attending weekly services. I joined a small group bible study at the church to enlarge my social circle and expand my friends list. My friend Shakira comes over every two weeks to help me with cleaning, and afterward, we have lunch and watch a movie. This experience gives me more social interaction to shield me more from those venomous voices of long ago. When I hear those whispering words now, I can easily laugh at them and say not this time I am too strong.

last pic liteLife has significantly changed for me in many ways compared to that darkness of my past. Structure and routine, along with all of the tricks and tasks listed above, helps keep me sane in an insane world.  All of the technology that is now available makes the darkness harder to find as it quite literally and even figuratively lights every corner.

My story is not over yet.

My MS story, darkness before the dawn…

pic 1 lossI had no idea that, along with my MS diagnosis, I would lose everything I held dear. In 2004 I started losing my mobility and my eyesight, which caused me to lose a job that was important to me, and I loved. I also lost my ability to drive, eliminating my independence, making my life even more isolative. To add insult to injury, all my friends vanished, solidifying my feelings of loneliness.

In 2004 I had to stop working because of my MS and the debilitating effects of its symptoms. Over the next month, all my friends erased themselves from my life, teaching me the true definition of abandonment. I felt embarrassed and ashamed to be seen in public, so I kept all my window blinds closed. I would not check the mail or take the trash to the curb until well after dark, trying to remove myself from the public eye. I would go weeks without interacting with another human being. My walking had become extraordinarily shaky, so I used the walls to stabilize me as I walked around the house.

pic depressI had been in this depression for several years, and I began to slide further and further down this deep dark hole of sadness. I met a guy a long time ago who could get you anything, although he is not the type of person to hang out after work. Jeff is an individual from the dark underbelly of the city, someone no one should know. I called him up and hesitated to say anything. He asked, what do you need, green? No, I said. I have never done drugs in my life, I thought. After a slight pause, I said something shiny and metal. I could not even bring myself to say the word, and I could not believe this idea that was running through my head.  I have just what you need.  I will be over in a couple of hours, he told me.

When Jeff showed up, he had a sports bag slung over his shoulder. He pulled out a small handgun and asked how many bullets I wanted. I thought to myself, one? I don’t know, I questioned. Just one box is probably enough for now, He said. We talked for a few minutes while he asked me several questions as he did not want this gun to be traced back to him. I assured him it could not be traced back to him, and I explained I made up the fact that I found the gun in my backyard while I was mowing. That’s good, He said. As he left, he said, Let me know if you need anything else. I thought to myself, how about we hang out for a bit? I longed for human interaction, but he was not willing to provide that…just this instrument of destruction.

pic gunI sat on the couch, looking at this hunk of metal for a while. I was thinking about the best way to do this, is it better in the mouth, the temple, or the chin? I put it on my lap, and tears began to fall down my face as I thought about my plans. Later, I brought it back out and set it on my lap as I kept hearing this voice inside my head, telling me nobody cares. One minute I am holding this thing up to my head with my finger on the trigger the next minute I was crying because life simply felt hopeless. I cannot do it as the voices in my head continually whispered the word failure, and no one will miss you, so just do it.  I said a silent prayer to a silent master, and all I received was a silent response, and I felt even more alone.

One day I got excited because my friend and his wife were coming to visit. Life is better with friends. When they arrived, we sat in the living room, Bob and I talked, and Lisa, his wife, looked around. I could see the judgment on her face when Lisa said, you are lucky I would love not to have to work and get paid. I kept quiet because I did not know what to say. I wanted to tell her I would trade my situation for hers in a heartbeat. I needed to explain you would not think I was lucky if you understood how lonely I am. I wanted to say it honestly hurts to be alone, my chest aches from it. However, I said nothing, and once again, the voices whispered nobody likes you, loser, pull the trigger, it will fix everything.

pic 4 friends helpThey stayed for about a half an hour before they left. Was I excited about this? This visit did not have the positive impact I thought it would. I thought if I got to see friends, I would feel better if I got to see people, but the pain was still there. It felt like the walls were closing in, and the air was getting thicker, making it hard to breathe. I wanted the voices to stop and the unbearable pain to end. Why does nobody care? Pressing the gun’s cold metal against my head, I could end this hurt to eliminate the loneliness. Every time I thought I could do it, but I could not. The voices told me like a repeating record: you are a coward and failure, and I cried myself to sleep.

I will stop this story here as it is still difficult to talk about, although I am now much stronger than I was back then. I read how talking about a tragic time in life like this and writing it down could help the writer and readers alike. There is a stigma to depression, so I did not want to tell my story. I did not want anyone to judge me, and I did not want people to look at me like I was weak. However, a friend reminded me how some people are going to judge you no matter what. She explained that my story shows people’s lives are not all sunshine and rainbows, and they are not alone. I am glad I am here to tell my story.

pic 2nd to lastAlthough my depression lasted nearly ten years, the suicidal depression persisted less time. These are just a few of my stories, as I could not put them all in this blog. All in all, I missed my entire 30s because of this feeling of deep sadness. During this dark time, I rarely saw doctors as a doctor visit seemed useless since I did not know how long I would be on this Earth.

Gradually the darkness began to lift enough for my mom to notice, and she quickly got me connected with the Stephen Minister program at Grove City Methodist Church. After nearly a year of visiting with me weekly, my Stephens Minister invited me to the church. People at the church welcomed me with hugs and handshakes, and I felt the love and kindness I had not felt in over a decade.

If you, who are reading this are going through darkness of your own, hold tight. I know it is difficult, but search out a church or a social group and find people who will welcome you and love you for who you are. Kindness, love, and friendship will fill all those places in your heart that are hurting. I promise you will find it; I have been where you are. Just hang on.

pic lastIf you are lucky enough not to know what it is like to be surrounded by darkness, I tell you someone near you needs your support, love, and acceptance. They need it today, and they need it desperately, so share your kindness, talk with them, and get to know them. Trust me-compassion is all it takes to save a life.

Read my next blog to find out how I guarantee I will stay sane in our insane world.

My MS story, ominous cloud rumble…

pic 1 searchI must be pickier than most because I doctor-hopped for a while, jumping from one to another, searching for a good neurologist. I have met many people with MS who said they are unhappy with their doctors, which absolutely confuses me.  I cannot comprehend why they do not merely leave the doctors with whom they are displeased.  If I am going to pay a doctor, he or she must have excellent bedside manners and be personable.  There is a relationship between you and your doctor, meaning he should not dictate things like a king.  The doctor I choose should list options, give the pros and cons of each, and then let me decide.  It is their medical degree, but it is my body, so my doctor should talk with me like a person.

I soon realized that my diagnosing doctor had terrible bedside manners.  On Thanksgiving week, I had an appointment with the doctor, and his cell phone rang during my appointment.  He picked up the phone and stepped out of the room for five minutes while I quietly waited.  He returned apologetically and explained that he had to set up some holiday dinner plans. That was unacceptable to me, so I left his practice never again to return after that appointment.

pic 2 listAfter I left my diagnosing doctor, my search to find a new neurologist continued.  After all, I would be spending a lot of time with him, relying on him to medically take care of me.  Finding a doctor is like finding a friend; there are many great people out there, but not all are friend worthy.  The doctor must take your insurance, and they must be close to where you live.  Accessibility is an often overlooked requirement, although it is more significant for those with physical challenges. I saw one doctor who had one step and a removable makeshift ramp that was too steep for wheelchairs and unsafe.

The next two year period was full of doctor appointments, MRI’s, and weird MS symptoms.  It took me a while to find a doctor that I was happy using, making this time frame extremely chaotic.  It was not easy finding an acceptable doctor, and learning how my MS would affect me made life miserable and did not make sense.  Life now was like trying to get directions from a person who does not speak English.  You will get there, but you will make some wrong turns along the way.  Of course, all of this caused me stress and stress, and MS are mortal enemies.  Stress causes more MS symptoms, creating more stress it was and is a vicious cycle.

pic 3 symptomsI was learning all about my new MS body every day as changes happened just that quickly.  I had these strange symptoms, and I did not know how to deal. For instance, I was extremely temperature-sensitive.  I had weird symptoms like extremely itchy hands that sent me to the ER.  Itchy hands sound silly, but it was much worse than you are thinking.   My walking had become extremely unstable and required me to stabilize myself using any solid surface.  However, I was too stubborn to get a walking aid, so I wobbled every time I walked, trying not to fall.  Pre MS it was easy to push myself when I hit a wall, but now pushing myself had devastatingly adverse outcomes.

last pic madI began to avoid everything because I did not want to be a burden on anyone.  Things were starting to go downhill, and my attitude was getting worse as I was very grumpy, and I had an extremely short temper.  A depression had begun to settle in, but I could not see it, and no one told me. I rarely saw my dad, yet my sister, who I saw even less often, said she did not like the person I had become but did not tell me why.  I saw my mom twice a month when she had me over for dinner.  I turned into a hermit and looked like one too.  I could feel myself slipping away, mentally, and emotionally, and it was not good.

Like the words from a horror movie, the worst was yet to come.

My MS diagnosing story, confusion of chaos…

last picOn a brisk October day of 2001, Doctor Cook called me into his office. I waited for him, and I sat on the padded exam table as my trepidation made me ponder the worst-case scenario. When the doctor came in, he pulled out and sat on a wheeled metal stool that squeaked as he rolled towards me. In a calm and clear voice, Dr. Cook said, Scott, you have Multiple Sclerosis. I could not have imagined what was to come as the next two years were hectic, chaotic, and had me drowning in confusion. I would soon learn life is ever-changing as this tumultuous filled pandemonium became my new normal.

Right away, the doctor put me on an intermuscular injectable interferon, an MS medication. Genuinely I am not too fond of needles, yet at that time, all MS medications were injectable, so my fear of needles did not matter. I began doing a lot of research on MS and found everyone had a cure for this autoimmune disease. Let me let you in on a well-known secret about MS; there is no cure for Multiple Sclerosis. However, I found many scammers who usually wanted you to buy their product. They would sell you special tonic water made from the tears of butterflies or some such nonsense. This pointless potion is guaranteed to deplete your savings account and make theirs swell like a deer tick.

pic 3 netThe internet and I had a close relationship for a long time after my diagnosis. I felt I needed to learn as much as possible about this maleficent monster preparing for the fight of my life. I spent hours that turned into days on the internet, trying to soak up MS knowledge like a sponge. On my quest, I quickly became educated about the shysters and charlatans that are out there ready to take all of your money. I was not about to give away any of my hard-earned coins to some low down swindler.

I felt like someone threw me in the deep end of the wave pool, and I did not know how to swim. Multiple sclerosis symptoms were smacking me around like waves from all sides faster than I could move. My eyesight went haywire, and I became legally blind, although I could sort of see causing constant consternation. I woke up one morning, and my legs were as unsteady as a newborn fawn forcing me at times to drag myself across the floor. Sometimes I had to military craw to the bathroom and somehow get myself up and onto the commode. At times while driving, my legs would be as useless as the ay in okay, forcing me to control my legs literally with my hands.

pic 4 bad eyeSince I worked as a draftsman, and vision of details was paramount to my job, those crazy symptoms forced me to stop working. I also had to stop driving as using my hands to physically grab my pant leg to move to the gas or brake pedal was unsafe. My body was simply going crazy, and I did not know what to do or if there was anything I could do. It seemed like every day, my body was fighting me and not letting me get up to defend myself brutally punching me blow after blow.

So I was now unemployed, which required me to live off of my seriously small savings. Once I moved out of my mom’s house after high school, I never again asked anyone for money. I now had to become creative in my accounting to make my bank account last as long as possible. I made sure my mortgage was on time, so I always had a roof over my head and a safe place to sleep. When it came to my utility bills, I paid one bill per month. January water bill only and February only electricity in March only gas in April it started over with my water bill.

Primarily I lived like the downtrodden wearing clothes that were old and made me look homeless. However, I had a few less worn clothes I could wear to my doctor’s appointments and not look excessively destitute. I kept my house at an uncomfortable temperature, to help keep my utility bills as low as possible. I had forty watt light bulbs in a few places around the house, meaning I walked around my house in near darkness most of the time. I am an Eagle Scout and a US Marine, so I was not afraid of camping in bad weather or with no heat or electricity. I did everything I could to keep from spending money needlessly.

last too smallBy this time, my weight had fallen below one hundred pounds. My doctors would always ask me if I was eating, I would say I ate three meals a day. Little did they know my portions were kept ridiculously small to keep my food bill exceptionally low. I would count twelve biscuits or one serving of spoon-sized frosted shredded wheat cereal with powdered milk for breakfast. I may have a drained can of corn with some Italian dressing for lunch. Then for my evening meal, I would possibly have one cup of mac-n-cheese always drinking water because my water bill was always paid. If I got hungry in between meals, I would have a couple of multigrain saltine crackers.

My new MS life was not going well…