If there is one thing my parents (seen here in a photo shortly after their wedding in 1957) instilled in me at a young age is to be weary of friends. My mom and dad didn’t have many friends, but those they did have were really, really great; however, to sort out the gems from the fakes was not an easy task. Both of them had told me stories about how they were hurt by friends in many different ways. Also, just because someone is related to you, it does not mean they care. My mom’s brother and his children are a prime example of this. I even tried over the years to establish a line of communication with them, which worked at times, and provided the opposite effect on others. When my mom’s sister (my GodMother, my middle name is her first name, I loved her dearly) died unexpectedly a couple of years ago, and they did not show up at the funeral, sent flowers or anything, it told me a lot about the kind of people they are. I mean… they would not even add me as a ‘friend’ on Facebook. I have no idea what I did to them. With family like this, who needs enemies?

Indeed, at a young age I had a “best friend” which turned out to be truly as fake as they come; out of the blue, one day, when I was 12, she told me she decided not to be my best friend anymore, she wanted to be someone else’s. She abruptly changed her seat assignment in class so she could sit next to her ‘new’ best friend and she would not even talk to me nor wave in the street and ignored me completely for years to come, even as we took the same bus ride to school, I would wave to her, say hi, and she treated me like I was invisible. Til this day, I have zero clue what happened. But that experience would pale in comparison of what was to come 18 years later.

Yes, 18 years later I was 9 months pregnant with my first baby. I was beyond happy, I was glowing. That happiness would soon turn into despair when Alex was stillborn at full term. I describe that time as if I walked to the edge of hell… and looked over. It took a while, a long while, but I did walk back to life, a different person. I would never be the person I once was. That person was gone. A lot of my ‘real’ friends were revealed during this time. Those that were there for me, even at his birth (yes Kelly, it’s you!), those that came to the hospital and wanted to see the baby, those that sent flowers, those that came to the funeral. We received so many flowers my house could rival any flower shop! It was wonderful, and a sad reminder of why at the same time. However, there were also those friends/family members who could have come to the funeral, but didn’t. To those wonderful souls that came, they will never know how much it meant to me for people to be there, to acknowledge his existence. At the same token, those that didn’t, gave me a message loud and clear. The distance they built that day would be hard to overcome.  I could also speak at length about  how horrible a “friend” treated me… and I do in my book I am writing. Some people are better lost than ever found. She was pregnant at the same time I was, and 2 weeks after her baby girl was born healthy, which was about 2 weeks after Alex’s funeral, she wrote me a letter, letting me know how… and I quote “cruel, insensitive and uncompassionate” it was for me to let her know about Alex’s death and how I made her last week of pregnancy ‘pure hell’. Excuse me? Her baby is healthy, and my son is 6 feet under… who went through ‘pure hell’ again? The way she hurt me that day is beyond compare. I was already crying every day, I was in hell, and what did she do? Using only a pen, she kicked me until I bled profusely. That’s how much she hurt me. I could have written her in disgust, cussing her out, but I didn’t. I apologized. I never head from her again, not even for her to offer her apologies, or condolences. Thank God. I want nothing to do with her, whatsoever.

Then, there is Nicky. About 13 months after my miscarriage (the 8 week miscarriage I had 7 months after Alex’s stillbirth), my son Nicky was born, diagnosed with Epidermolysis Bullosa 12 hours after birth. The “Recessive Dystrophic” diagnose came in a month later, and we weren’t happy. It meant the disorder was progressive, fatal. My family and friendship relationships were tested once again. This time, however, I have to sadly admit, I was the one that went neurotic. I was utterly alone. My family was in Europe, my husband’s family out of state. I was on my own. Nicky needed 24 hour care, insurance didn’t pay for bandages or a nurse (among other things), I went without sleep for 3 years, a bankruptcy, we lost the house, cars… my marriage. You would think people would cut me a little slack? Some did, indeed. Others, not so much. I don’t blame them. It took me years to find myself again, many years. I grabbed the friendships of anyone that would listen, mostly EB parents, but they were hard to find. RDEB is so rare, there are only 600 cases in the US and doctors could not divulge other parents’ information. This was 1997, the internet was not what it is today, not by a long shot. But just because you found another EB parent, that does not mean you can get along with them beside talking about… EB. My parents wanted to help me so much, but the distance was just too big. My ex in-laws were MIA. Til this day, Nicky knows exactly who my sisters and their children are, but has no clue who his ‘other’ cousins are, and has no idea what his aunt looks like, and it makes sense since he hasn’t seen them in over 10 years.

There have been a few other instances that tested relationships, my husband’s strokes was a big one. When nobody came to see him after his second stroke and I did not receive a single note of support (since I was the sole caregiver for both my son and my husband) unsolicited by blogs I would write, to me they were red flags. These are people that claim to care, where are they when they are needed? Nowhere to be seen, apparently. Duly noted.

I would say, however, the ultimate test of finding out WHO your friends and family are, rests on… Facebook. Yep, you heard me right, Facebook. On what other way you find out who wants to be connected to you and who does not? On what other way you can find out what kind of people they are, depending on what they post? Do they complain about the most trivial things ever or are they having serious trouble and need support? Who is giving them support and who does not? How many negative or hateful things do they say on their status? Are they posting biased propaganda, perpetrating lies, or are they trying to be positive, helpful, inspiring?  Are they hateful or are they loving?

I have a LOT of friends. A LOT. I have to admit I’ve had quite a fun time locating old school or work friends at different times, but most of the friends I have have requests from are other EB parents and such around the world. I am perfectly OK with that. The problem with having a LOT of friends though is that you are bombarded with all sorts of things on the news-feed, some of which I’ve found distasteful or completely disagree with and makes me wonder about the person that posted it. This latest election provided a host of truly *nasty* posts. I have to admit that the moment a ‘friend’ posts something nasty, I immediately hide them from my feed. I truly want nothing to do with people that can be so hateful. I won’t un-friend them because then they are mad at me and I already know they are hateful, so I don’t want to invite that kind of hatred in my life, but I have to admit, sometimes I can’t help but comment. I try not to, but sometimes it’s just too much.

In my life I’ve seen a great deal of suffering, a great deal of people getting unlucky, people whose loved one died in an accident, lost jobs unexpectedly, people who got really sick for a long time. A woman I knew in the early 90s got hit by a drunk driver and she became disabled, she was so young and gorgeous, with a little boy to boot, truly a tragedy. I’ll never forget how hard it was for her to get the care she needed. Another tragedy on top of it. Back in 1986 we were so poor, even though we worked nearly full time, we still did not have enough money for food after all our bills got paid. I spent $10 at the grocery store once and my boyfriend got really mad at me. I used to beg for scraps of food at work (I worked at a restaurant while I went to school to get my Real Estate licence) and, I hate to admit it, sometimes I would even steal food. It didn’t even dawn on me I could ask for food stamps and I wish I did.

I also didn’t dawn on me to ask for food stamps 13 years later after my divorce when Nicky was little and I had such a hard time finding someone to care for him (everyone would refuse and told me they did not want the liability) so I could go get a job to support us until my cousin’s girlfriend and another one of my cousins told me to get food stamps immediately, seeing how dire my situation was, telling me that these programs were made specifically for people like me. I have to be honest, I felt like scum sitting in the social welfare office with Nicky in tow, but they were gracious to me, which I will forever be thankful for. I got a few hundred dollars worth, which came in handy until I was able to find a sitter that could watch Nicky 4 months later and I got a good job as a Web Designer. When that company was dissolved and I lost my job which by then I could do from home 3 years later, I tried to get food stamps again just to tie me over, but I had moved to California and to qualify was simply impossible. They treated me like a criminal and lower than scum, I remember leaving in tears, having to stop the car to let out a squeal of anger and disgust. Nicky was with me and he had a corneal abrasion, he looked like hell, and nobody, NOBODY cared. In the end I didn’t qualify because I had more than a $3,000 equity in the car. Never mind that I still owed $9,000 and I could not sell it, it was my only mode of transportation, and I had a sick, sick child to take to the doctor every 5 minutes! Unemployment came in to save the day. I have no clue what I would have done without it. No idea. I would have for certain end up in the street, no lie. I tried and tried to get a sitter for Nicky, I noticed many disabled children could get respite with a Nurse, but not Nicky. He was denied. I had no idea who I was going to leave Nicky with. I sent my resume to THOUSANDS of companies to work from home (and this is no exaggeration) to no avail. Unemployment would time me over until IHSS took over, and THANK GOD for that!

At any rate… considering all I’ve been through, when I see anyone posting on their wall that Food Stamps and social programs are ‘fraud’ when they fully support trillions of $ going to wars and tax cuts for millionaires, it’s simply unthinkable to me, unthinkable, and it tells me a LOT about what kind of people they are. Last I checked, it was not the poor, the elderly, the sick nor the handicapped that caused the recession. It was the war, the bank deregulation, and the rise in oil prices of 2007 among other factors. Read about it here.
Then there are those EB parents who support repealing Health Care Reform, when HCR helps their child with their pre-existing condition never being denied insurance and eliminates caps which many EB kids that would go through a BMT would reach, etc. I realize different people have different priorities, but in this case it seems as if the life and health of their child is not one of them. Another friend, who was having a hard time getting help from the state when she fell on hard times, was mad and went on a tirade when she blamed the President… of all people. For goodness sakes! It’s not the POTUS’ fault if your state has tough, tough rules before they can help you. Every state is different. I should know! Arizona had zero programs for children with disabilities at the time I lived there, while California has CCS. She then proceeded in voting for the people who would make things even TOUGHER to get for those in need. It defies logic. Why would anyone vote against their own interest? There are also others, who told me tales of needing to apply for Welfare and Gov. Health Care when they lost their job and their son was sick. But instead of being thankful, they went the ungrateful route. They claimed it was ‘too easy’ and called people freeloaders that get it. But of course, they were not. I suppose she would have been more grateful if it would have been harder? This is the same program in the same state that denied me food stamps because of the equity I had on my car by the way… it was hard for me, I got zero help. You guessed it, they voted against others getting help. They got theirs in their time of need, who cares about others’ needs? Yet another friend (and when I talk about friends, it could be a relative or an acquaintance )  was just so disgusted over the results of the election that told ME that she hoped I would never regret my decision. Regrets? She supported the man that took a surplus and threw the country into a recession and she is talking to me about regrets? I have no regrets. Zero. I am sorry if the life and health of my child comes first. It’s just how it is. I make no apologies.

This election made me hide from my feed every person that either defied logic, was hateful, negative or just drove me batty with their disdain for the elderly, handicapped, poor and sick. This does not mean in ‘real life’ they cannot be my friends. Not at all. We can be pals that simply do not talk about politics, is all. But because of the election, I also found a great deal of kindred spirits. People surprised me, delighted me, I understood them and they understood me. Social media can truly be a wonderful tool to find others in similar situations who are dealing with things like you are. There is no more comfort found in those who “get you”. None.

We all know that friends are important in our lives. They are great to confide in and they love you when you are sick or sad. Friends are (other than your parents) the most influential people in your life.  They influence you for both the better and the worse. I have to say, I’ve found great friends in real life and on social media that help me when I feel low and give me a boost when I need it. They are always ready to give a kind word, a thumbs up, a like, and a pat on the back when needed. I try to do this for a variety of friends that I admire or/and care for. That is what it’s about. It’s about LOVE. Loving one another, not judgment, not jealousy, not apathy. Just LOVE.

Comments